A better health care system now within reach | Physicians for a National Health Program
There has been a lot of debate about health care reform since the Patient Protection and Affordable Care Act was passed in 2010, and the debate continues.
On the one hand, many people feel that the new law, and it is the law of the land, imposes too much of a burden on the corporations that make American business go. In short, they believe reform is too expensive.
On the other hand, many people, different people, believe the new law falls way short of its original intention, which was to reform the healthcare system to save money and improve services. In short, they believe failure to reform is too expensive.
To be sure, some reforms are underway, but they mostly involve relatively minor changes to the existing private insurance system compared to a true renovation of the health care system.
For nearly two decades, since about 1993 or 1994, some physicians have been calling for a single payer healthcare system that promises to eliminate the 30% overhead that we now spend on Administrative costs. The idea is we allow doctors to focus on medicine, and establish a fair payment system that is less expensive for the patient, while at the same time improving the quality of services.
As patients and caregivers, any person associated with vasculitis has a personal stake in healthcare reform. Without reforms, you can look forward to another generation of overly expensive and complicated healthcare with plenty of denied claims for medically necessary procedures.
At this point I do not advocate one proposal over another, but I am interested in learning about all of the options. The least we can do is to make ourselves aware of the facts of the issue so we can act in our own best interests as citizens. Do not rely on the mainstream media to give you the information you need to know.
If you have not yet learned about this proposal, I encourage you to start with a recent article that gives a bit of an overview. Then you can explore the rest of the PNHP site to learn more about this particular option.
A better health care system now within reach | Physicians for a National Health Program
Showing posts with label ideas. Show all posts
Showing posts with label ideas. Show all posts
Wednesday, November 30, 2011
Monday, July 25, 2011
Movie Review: Fat, Sick & Nearly Dead
I recently stumbled across a film in Netflix that may change my life, and it also made me think of all the vasculitis patients out there who might benefit from considering a lifestyle change. Just taking meds is not enough to protect your longterm health.
I have long believed, and I tell my daughter all the time, that there are at least three areas of personal health where vasculitis patients can take action to positively affect their health. They can make choices regarding the quality of their diet, exercise, and sleep. You can list objections, but the fact remains that how you manage these three things is up to you.
One link worth special mention is the jointhereboot partners page (listed at the end of this article), where you can link to specific information by people featured in the film, including Dr Joel Fuhrman, a medical nutrition specialist. Every patient is different, but if you are trying to reduce your prednisone, your doctor may agree that eating natural foods and sticking to an exercise program is one healthy way to do it.
If you ever felt powerless regarding your condition, this film, and the ideas presented in it, can give you an action plan that will make a huge difference in your life. Watch the film, then call your doctor and talk it over. You do not know what you are really capable of, unless you try.
Now the key to success for me, is to transform intellectual understanding into daily action and transform habits on a permanent basis. That is what the Reboot Movement is all about.
I read and study every day to improve different aspects of my life. For example, when learning to be a better basketball coach, I learned that it takes at least 28 days of concerted effort for a human being to change a habit. Now, instead of challenging young players to improve their ball handling habits, I am going to challenge myself to improve my diet and exercise habits.
Going back to those with a chronic illness, the film repeats over and over how important it is to consult with your doctor and have blood levels checked when you have a condition that requires medication. As you will see, change is not easy, but you will also see how both of these men were able to reduce or eliminate their medications as a result of their own actions.
So, here is some information about the film.
Here is the official trailer on YouTube:
Another video that is also compelling is Joe Cross's interview with Cyndi Edwards on Daytime.
The statistics do not lie. According to U.S. Centers for Disease Control (CDC) figures, "About one-third of U.S. adults (33.8%) are obese. Approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese" (citation below). In the film, a nutritionist at Brigham & Womens Hospital named Stacy Kennedy, MPH, RD, LDN, states "the kids of today are not expected to live as long as their parents." That is very alarming, but also believable when you look at how kids eat. Put it all together, and I think everyone should watch this film.
Cited from: CDC Obesity and Overweight Trends
http://www.cdc.gov/obesity/data/trends.html
Companion website:
http://www.fatsickandnearlydead.com/
Includes more about the stories, recipes, juicing testimonials, links to YouTube and FaceBook, and to the DVD. Also links to the Reboot Movement where you can get more detailed information about how to go about planning your own personal reboot.
http://jointhereboot.com/
This website gives you all the information you need to evaluate the reboot program, and if you decide to go for it, all the information you need to make it a part of your life.
How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.
I have long believed, and I tell my daughter all the time, that there are at least three areas of personal health where vasculitis patients can take action to positively affect their health. They can make choices regarding the quality of their diet, exercise, and sleep. You can list objections, but the fact remains that how you manage these three things is up to you.
One link worth special mention is the jointhereboot partners page (listed at the end of this article), where you can link to specific information by people featured in the film, including Dr Joel Fuhrman, a medical nutrition specialist. Every patient is different, but if you are trying to reduce your prednisone, your doctor may agree that eating natural foods and sticking to an exercise program is one healthy way to do it.
If you ever felt powerless regarding your condition, this film, and the ideas presented in it, can give you an action plan that will make a huge difference in your life. Watch the film, then call your doctor and talk it over. You do not know what you are really capable of, unless you try.
Now the key to success for me, is to transform intellectual understanding into daily action and transform habits on a permanent basis. That is what the Reboot Movement is all about.
I read and study every day to improve different aspects of my life. For example, when learning to be a better basketball coach, I learned that it takes at least 28 days of concerted effort for a human being to change a habit. Now, instead of challenging young players to improve their ball handling habits, I am going to challenge myself to improve my diet and exercise habits.
Going back to those with a chronic illness, the film repeats over and over how important it is to consult with your doctor and have blood levels checked when you have a condition that requires medication. As you will see, change is not easy, but you will also see how both of these men were able to reduce or eliminate their medications as a result of their own actions.
So, here is some information about the film.
Fat, Sick & Nearly Dead
1h 37m 2010
Director Joe Cross takes a journey of healing to examine and change his own life choices, and along the way meets Phil Staples.
This movie details how they both dramatically improved their lives by taking control to regain balance. Both men were obese. Both men were also diagnosed with Uticarial Vasculitis, so the odds against them even meeting one another were phenomenal.
The two success stories are a testament to what is possible when life changing awareness efforts go grass roots. They launched a movement to help other people reboot their lives. This film takes those grass roots efforts and brings them to a global audience.
Here is the official trailer on YouTube:
Another video that is also compelling is Joe Cross's interview with Cyndi Edwards on Daytime.
The statistics do not lie. According to U.S. Centers for Disease Control (CDC) figures, "About one-third of U.S. adults (33.8%) are obese. Approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese" (citation below). In the film, a nutritionist at Brigham & Womens Hospital named Stacy Kennedy, MPH, RD, LDN, states "the kids of today are not expected to live as long as their parents." That is very alarming, but also believable when you look at how kids eat. Put it all together, and I think everyone should watch this film.
Cited from: CDC Obesity and Overweight Trends
http://www.cdc.gov/obesity/data/trends.html
Most powerful quote from Phil Staples:
"What advice would you like to give to others considering a Reboot or a lifestyle change?
PHIL:Please stick with it the first 4 days, I promise you all the detoxing and the feelings will be over soon. On day 4, you will feel great and the rest of the Reboot will be a blast. You will feel better, lose weight, and your body chemistry will be where your doctor wants it. All the doc will be able to do is smile and shake his head at the ease of it all."
Cited from: JoinTheReboot Expert Blog article, "Phil & Bear: Where are they now?"
http://jointhereboot.com/phil-bear-where-are-they-now/
Companion website:
http://www.fatsickandnearlydead.com/
Includes more about the stories, recipes, juicing testimonials, links to YouTube and FaceBook, and to the DVD. Also links to the Reboot Movement where you can get more detailed information about how to go about planning your own personal reboot.
http://jointhereboot.com/
This website gives you all the information you need to evaluate the reboot program, and if you decide to go for it, all the information you need to make it a part of your life.
Netflix description:
"Focusing on two men whose bodies have been trashed by steroids, obesity and illness, this documentary chronicles the rigorous healing path -- including a two-month diet of fruits and vegetables -- that both attempt in a bid to rescue their health."
Note: I would suggest it might be worth trying Netflix for a month just to watch this film.
If you already have Netflix, here is the link: http://movies.netflix.com/WiSearch?oq=fat+sick&ac_posn=1&v1=Fat%2C+Sick+%26+Nearly+Dead
How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.
Tuesday, August 3, 2010
Awareness Idea: Gift cards
What if every vasculitis advocate (patient, family, caregivers, friends) carried with them a booklet with half off coupons for some national chain, like Target, or Subway, or whomever the partnership can be set up with.
Then when they have the vasculitis talk with some new person, they have an immediate way to raise funds for vasculitis with them, right there on the spot.
Ideally, these coupons require someone to put their name and contact information so we can send them more information about vasculitis later as a follow up. But the coupon itself is immediately redeemable, so there is an immediately useful reason for them to buy the coupons.
The advocate submits the money as a donation to the VF, and collectively we might be able to raise an additional several thousand dollars.
I need to share this idea with Bob Sahs, the new Vasculitis Foundation Board President.
I will get back to you guys if this pans out.
--
Then when they have the vasculitis talk with some new person, they have an immediate way to raise funds for vasculitis with them, right there on the spot.
Ideally, these coupons require someone to put their name and contact information so we can send them more information about vasculitis later as a follow up. But the coupon itself is immediately redeemable, so there is an immediately useful reason for them to buy the coupons.
The advocate submits the money as a donation to the VF, and collectively we might be able to raise an additional several thousand dollars.
I need to share this idea with Bob Sahs, the new Vasculitis Foundation Board President.
I will get back to you guys if this pans out.
--
--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader
Friday, December 4, 2009
NMVasculitis 2009 Almost Annual Report and 2010 Things to Come
(TIP: Those of you getting Email copies, try reading this online in the blog (http://nmvasculitis.blogspot.com/) if you want to see all the formatting and hyperlinks intact. The blog is also working again inside the website on this page: (http://www.nmvasculitis.org/Home/events/cnmvf-blog-1). Thanks to Google for fixing that code.)
Hello Friends,
It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.
I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.
We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.
YOU ARE ALREADY CONNECTED
You can already reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)
In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.
Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!
Here are some other things you can expect...
VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010
We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.
Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)
The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?
Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!
We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.
At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.
We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.
If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.
2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!
Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.
You can view some of the presentations from 2008 here:
2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.
We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.
HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.
I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends. I would sure be interested to know these numbers. Would you?
Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively. If you find more information, please send it to me or send it to the group list.
It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...
MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.
Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.
Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.
WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.
WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.
HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.
2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.
You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.
Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.
Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.
Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.
MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.
I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.
I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.
Tell us about your doctors now:
HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.
It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.
What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.
The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.
At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.
As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.
SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM
I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?
Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.
FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.
MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.
DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?
INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:
Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.
I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.
We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.
Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.
VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.
Come to a meeting and I can get you a form, or go online to:
CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.
This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.
Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.
Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis
Hello Friends,
It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.
I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.
We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.
YOU ARE ALREADY CONNECTED
You can already reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)
In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.
Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!
Here are some other things you can expect...
VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010
We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.
Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)
The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?
Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!
We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.
At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.
We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.
If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.
2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!
For more information see:
2010 Vasculitis Symposium set for July 30 - August 1, 2010 | Vasculitis Foundation
http://www.vasculitisfoundation.org/2010vasculitis-symposium
Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.
You can view some of the presentations from 2008 here:
Vasculitis Foundation
"8th International Vasculitis Foundation Symposium"
http://www.vasculitisfoundation.org/video
2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.
We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.
HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.
I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends. I would sure be interested to know these numbers. Would you?
Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively. If you find more information, please send it to me or send it to the group list.
It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...
MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.
Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.
Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.
WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.
WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.
HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.
2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.
You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.
Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.
Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.
Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.
MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.
I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.
I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.
Tell us about your doctors now:
NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors
HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.
It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.
What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.
The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.
Your Ticket to a Healthier Life!
You can be a part of the largest and most comprehensive Health Fair in New Mexico. We saw some 10,000 health-conscience New Mexicans attend the 2009 Eyewitness New 4 Health Fair and we are already expanding for 2010.
Our show hours are:
Saturday, January 23, 2010 9:00 a.m. - 5:00 p.m.
Sunday, January 24, 2010 9:00 a.m. - 4:00 p.m.
Lujan Exhibit Hall at Expo New Mexico (State Fairgrounds)
At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.
As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.
SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM
I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?
- The Blood Cells
- NMVASCULITIS
- The Eosinophils
- The Prednisones
- The Pred-Ni-Zone
Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.
FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.
MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.
DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?
INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:
Event: Watch "Mystery Diagnosis"
What: Lecture
Start Time: Monday, December 7 at 10:00pm
End Time: Monday, December 7 at 11:00pm
Where: Your living room on the Discovery Channel
Discovery Health :: TV Listings :: Mystery Diagnosis
http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x
Summary:
Mystery Diagnosis
The Boy with the Strange Stare
In 2006 DeAnna and Jonathan Withrow's son Landyn is born; but when they hold him for the first time, they notice his gaze is fixed on the ceiling. In March of 2004 Cyndi Webber notices a bruise on her leg that will not disappear.
Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.
I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.
We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.
Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.
VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.
Come to a meeting and I can get you a form, or go online to:
Membership Renewal, US | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/206
or
Membership Renewal, International | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/207
CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.
This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.
Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.
Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis
Friday, October 16, 2009
October 2009 Chapter News
OCTOBER 2009 Chapter Meeting News
18:00 Thursday, October 15, 2009
This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/
In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)
RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November
Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.
WHERE WOULD YOU LIKE TO GO NEXT MONTH?
If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.
What? Huh? Did you say something? :o)
HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)
Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu She was wanting italian for her birthday dinner, so that fits.
I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu
Are you drooling yet? I nearly was after we ordered.
MOBILIZING THE STUDENT BODY
Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.
I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.
If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.
HALLOWEEN IDEA
Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.
Boo!
WISH YOU WERE HERE
This meeting was more like a dinner, but we did discuss awareness ideas.
We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.
In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.
I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.
I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.
RECRUITING FAMILY & FRIENDS
Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.
Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.
Though rare, there are others out there with vasculitis, and they do not congregate naturally.
Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.
As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.
HEY, WHAT ABOUT THAT GOOGLE GROUP?
I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.
Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.
I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.
Hint: Please share your own stories and ideas so I can include them
with monthly chapter updates. Send me Email!
You can post yourself, or at your request,
or I can quote you anonymously.
Just please let us know how you are doing.
MOVING THE MEETINGS
Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.
For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.
We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu
This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.
People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.
Come and drink water if you like. I will keep the wait person happy
with my innate charm and Meaghan with her good looks.
When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.
GETTING ATTENTION
We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]
The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.
T-SHIRTS FOR AWARENESS IDEAS
Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.
This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.
I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.
In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.
Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.
Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?
Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?
SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY
Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?
I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.
If you start participating actively,
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?
I am reminding myself now to update the Facebook wall page for this chapter.
STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN
Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..
The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.
Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.
For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.
Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.
How to do this in an affordable way? Consider partnering with Cafe Press the online promotions company. They make the stuff as it is ordered and a percentage goes to the sponsoring organization. So, less percentage, but a higher volume. To main tain non-profit status, this must be done at the national level, but it is just possible that if a chapter has their own successful design, then perhaps a bit of the proceeds could also be earmarked to offset chapter or regional awareness event costs. Not just because, but when there is an event, it would be easier to request a budget if you know your chapter is also producing income. Hmmm....
Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.
Hello Vasculitis Foundation (VF)?
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?
Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.
One final thought as we are actually standing up to leave CPK.
If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.
Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.
Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
18:00 Thursday, October 15, 2009
This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/
In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)
RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November
Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.
That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.
If you get a second copy, just know I am also sharing it with others.
WHERE WOULD YOU LIKE TO GO NEXT MONTH?
If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.
**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**
and have a luau on a moonlit beach at night... OOoo**
What? Huh? Did you say something? :o)
HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)
Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu
I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu
Are you drooling yet? I nearly was after we ordered.
MOBILIZING THE STUDENT BODY
Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.
I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.
If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.
HALLOWEEN IDEA
Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.
WISH YOU WERE HERE
This meeting was more like a dinner, but we did discuss awareness ideas.
We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.
In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.
I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.
I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.
RECRUITING FAMILY & FRIENDS
Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.
Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.
The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.
Though rare, there are others out there with vasculitis, and they do not congregate naturally.
Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.
As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.
HEY, WHAT ABOUT THAT GOOGLE GROUP?
I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.
Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.
I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.
with monthly chapter updates. Send me Email!
or I can quote you anonymously.
Just please let us know how you are doing.
MOVING THE MEETINGS
Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.
For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.
We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu
This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.
People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.
with my innate charm and Meaghan with her good looks.
When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.
GETTING ATTENTION
We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]
The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.
T-SHIRTS FOR AWARENESS IDEAS
Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.
This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.
I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.
In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.
Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.
Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?
Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?
SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY
Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?
Whois contact data:TWITTER IS COMING SOON TO A WEB SITE NEAR YOU
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no
I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?
I am reminding myself now to update the Facebook wall page for this chapter.
STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN
Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..
The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.
Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.
For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.
Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.
How to do this in an affordable way? Consider partnering with Cafe Press
Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?
Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.
One final thought as we are actually standing up to leave CPK.
If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.
Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.
Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
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