(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!
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)
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
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
