Let me know if you are going, and I will look for you there. Perhaps we can sit together at one of the functions.
Meaghan and I saved up reward miles, and it turns out we will be going after all, even though I still prefer the longer symposium format.
FYI for those who need to know... I recently wrote up some information about how to get from the airport to the hotel. It is now included as a link on the event page on the VF website, and you may have seen this show up on Facebook:
Public Transit options for 2012 Atlanta Symposium for those who want to know their options. http://goo.gl/JxZLR. Includes info for taxi, shuttle, trains and buses from most expensive to least expensive. Did you know you can take the train and a bus and will walk less than 5 minutes for $2.50?
What about something closer to home...
Are you coming to the chapter meeting
this coming Saturday, June 9th at 3PM?
I saved up my calories and plan to have a big frozen yogurt for myself.
Come join me at Deli-Berry and we will have a nice chat and talk about some of the latest and greatest in your life and mine. Fi you are a new patient, come on down and we can get you started on the right path to becoming a better self advocate.
CAN you talk? Then tell everyone you meet about the Vasculitis Foundation. What it is, what they do, and why they should contribute.
CAN you walk, roll, hop, or crawl? Get your own Vasculitis Foundation T-Shirt and wear it proudly anytime you are out and about. When people ask you what it is, tell them. If you attend a fun run, wear your Vasculitis Foundation gear instead of their T-Shirt. You can wear that later. When people ask you why, tell them.
CAN you drive? Consider putting a Vasculitis Foundation bumper sticker on your car. Spread awareness while driving around town. Give them to your friends and family as well.
CAN you involve friends and family? When they ask if there is anything they can do, and you usually say no... stop telling them no. Instead tell them to consider making a contribution by becoming a member of the Vasculitis Foundation, then donate, volunteer, and advocate for vasculitis patients every day.
You CAN tell people about vasculitis. The power of one voice is stronger than you may know. Tell people about vasculitis everywhere you go. Get some brochures from your chapter leader and pass them out at your doctors office, and give them to people you meet. You tell one person, then they mention it to others, and awareness spreads like a virus. Together, we can make a difference.
I am pleased to invite you to attend the 2012 Vasculitis Symposium via webinar.
The webinar will offer some of the sessions from the 2012 Vasculitis Symposium. Please note, you will need to register for each session you want to attend.
What Is The "State of the Art" for Treatment of Vasculitis?
Peter A. Merkel, MD, MPH
Division of Rheumatology, University of Pennsylvania
What Does The Future Hold That Is Even Better?
Gary S. Hoffman, MD, MS, Center for Vasculitis Care and Research, Cleveland Clinic
The VCRC Vasculitis Illness Perception (VIP) Study: Illness Perception, Fatigue, and Function in Systemic Vasculitis
Peter C. Grayson, MD, Boston University Vasculitis Center
Dr. Phillip Seo, The Johns Hopkins Vasculitis Center, and Professor Wolfgang Gross, University of Luebeck, Clinic for Rheumatology, provide an overview of Vasculitis in general, including understanding treatments, tests and procedures, and medications and side effects.
Title:
Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis
Dr. Kenneth J. Warrington of the Mayo Clinic discusses Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis.
Title:
Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis
Date:
Saturday, April 21, 2012
Time:
10:30 AM - 12:00 PM CDT
Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis)
Dr. Antoine G. Sreih of the Rush University Vasculitis Clinic and Dr. Curry L. Koening of the University of Utah discuss Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis).
Title:
Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis)
I have been helping with a few projects for the Vasculitis Foundation, including the two YouTube Channels for Education and Awareness, advising on the Vasculitis Foundation Video Project, and putting in a lot of time with some behind the scenes changes related to improvements to the VF website that are not public yet. Consequently, you guys have waited for me to get things started this year. Your wait is over. I am setting up some events in 2012 and you are invited to participate. I hope you will come. I also hope some of you will help me run these events to make them more successful.
At any event, be prepared to tell your story anytime people ask about vasculitis. I can arrange for a news reporter to interview one or more of you if I know for sure a patient will step up to be a voice for us.
Vasculitis Foundation Video Project
I say again, patients and caregivers, please consider telling your story on film for the Vasculitis Foundation Video Project. The better videos will appear on the VF Awareness Channel on YouTube. This is a powerful way you can share your story for many good reasons. The bottom line is increased awareness translates into increased funding for research. Your story may also help another patient to know they are not alone. More information, plus links to the Video Project Guidelines, on the YouTube Channel here: http://www.youtube.com/user/vasculitisawareness
The video project has no deadline. However videos submitted prior to the end of February will be considered for a professionally edited wrap up video to be shown at the two symposia this year in Chicago (April 21) and Atlanta (July 21).
If you do not want to be on video, then you can send a photo of yourself along with a typed version of your story for publication on the Patient Stories page of the Vasculitis Foundation website: http://www.vasculitisfoundation.org/patientstories
Also, remember that I have offered to help film patient and caregivers videos. Contact me if you are interested.
Party for the NM Vasculitis Kids
We have a number of kids in our chapter who range in age from 11 to 19. There are also a couple of kids who have not yet connected with our chapter officially. I would like to connect with those families and get the vasculitis kids and their parents together for some kind of fun party this Spring. Like Putt Putt, or Bowling or Hinkle or something like that sometime after the weather warms up a bit. We would outfit the kids in Vasculitis Foundation T-Shirts so they will be promoting awareness while they have a good time and get to know one another.
If it goes well, we could get them together again to go to the movies sometime. Nobody understands juvenile vasculitis issues like another kid who has these conditions.
You can suggest a date by contacting me now, or I will pick a date soon and let you know. I will try for a time that works with all the school schedules.
Pot Luck Dinner Party for all New Mexico Patients and Caregivers
I have a plan to entice you all to come enjoy some good food and good times with each other. We can put together a simple pot luck dinner party for all the patients and caregivers.
I have a safe place in mind where we could let the kids go downstairs to hang out young person style, and the grownups could stay upstairs and hang out older person style. Maybe make it an annual event during awareness week in May? Just an idea at this point...
If it goes well, we could do it again in the Fall, like late October to mid-November. I think the Thanksgiving season is a special holiday for vasculitis patients.
Again, you can suggest a date, or I will pick one. Probably a Saturday evening in April or May. If you send your blackout dates, I will try to accomodate you as much as possible.
Run for the Zoo in May with the "Vasculitis Foundation in New Mexico" Group
I would like to get group together for the Run for the Zoo event on Sunday, May 6th, 2012. This is a city wide event with lots of media exposure.
We all know vasculitis patients suffer from fatigue, and so YOU may or may not want to take a One Mile Fun Run/Walk yourself. However....
You can recruit your able bodied friends, family members, coworkers, neighbors, etc. to walk on your behalf. Then we can put together a larger group to walk together carrying a vasculitis banner or maybe some flags? Everyone you get to do this on your behalf could also become a member of the Vasculitis Foundation and get an official 2012 Awareness T-Shirt. Money from those memberships helps to fund vasculitis research, so ask them to join the VF today!
I can get at least twelve people from my family to do this on a Sunday. If I put this out to my basketball teams and their families, then I just might get a few more people on board. How many people can you get to show their support for you?
We would get lots of exposure just being around thousands of other people. Contact me if you want to help me organize this event. We would register as a group, and have to pay the registration fee. The proceeds benefit the Albuquerque BioPark.
I will have more information for you on this within a day or two. If we act soon, there are reduced registration fees through Monday February 20th.
Call your "recruits" today and get them to pledge to walk on your behalf! Send me Email as soon as you know you have some people who can do this so I can add them to our groups list.
2012 Vasculitis Foundation Symposium in Chicago on Saturday, April 21st
The Symposia this time are broken into two one day events. This is a jam packed opportunity to gain knowledge about vasculitis, and rub elbows with other patients who know what it is really like.
I plan to attend the Chicago Symposium, and then stop by the main office in Kansas City to do some pow wowing after the conference. I am not sure yet about Atlanta. The key for me is I either drive or take trains, but not planes. If you want company on the trip, I will be leaving on the Amtrak Southwest Chief probably the Thursday prior to the event in Chicago. I will let you know once I finalize my arrangements.
T-Shirt and/or Poster Art for Vasculitis Foundation in New Mexico?
There is no deadline for this, but it would be nice to have something done in time for May. I have long thought it might be fun to design a T-Shirt for our chapter awareness efforts. I wonder if any of you are artists? Would you like to help me design some artwork for a T-Shirt, and/or a poster that we can use in conjunction with other Vasculitis Foundation in New Mexico events? It does not have to be perfect, but it should reflect who we are in relation to our state and our shared connection through vasculitis.
If anyone would like to participate in these events, or help me plan and organize these events, please contact me, then we can discuss details at a chapter meeting or we can arrange to meet for breakfast or lunch sometime. Call me.
The Vasculitis Foundation is preparing a special video for the symposium in Chicago, featuring stories by patients just like you. This is at the international level of awareness.
We need YOUR help. Check out the Video Project Guidelines in the links on the YouTube Channel.
You are encouraged to prepare a 2-4 minute version of your story, and share that with the Vasculitis Foundation. These stories about real people with vasculitis will put human faces on this condition and increase public awareness.
Increased public awareness helps you too, because when more people become aware of this condition, then we expect more people will contribute to the cause. Either as volunteers or as financial contributors to research. We will eventually use this body of patient stories to help support grant requests to federal research programs and to major pharmaceutical companies, who provide funding for research into better treatments and an eventual cure.
It all starts with you. All ages welcome, all diagnoses of vasculitis should be represented, plus family and caregivers too! Don't be shy. Check out the YouTube Channel, and you will see other people telling their stories soon. We are in this together.
Now, to make this easier for you. I can help those of you who live in New Mexico.
I have access to the equipment, and will by appointment, meet you anyplace that is convenient for both of us to record your story. I will even travel to meet you in your home town if you are willing to meet with me. We can record your story as many times as it takes for you to feel comfortable with the results.
I cannot emphasize enough how dramatic the results of this video project could be, both to you, and to other patients who may see your story and know they are not alone.
If you are able and willing to record your own video, perhaps with the help of a family member, then please let me know you plan to create a video. You can also contact me if you want my help recording your story.
Don't want to do a video?
Then send me a nice photograph of yourself and a typed version of your story. I would like to know your stories anyway, and I can make sure it gets where it needs to go. We cannot publish all of the videos anyway, but there is a page on the Vasculitis Foundation website where your story can be presented. See this page for examples: http://www.vasculitisfoundation.org/patientstories
Thank you for your consideration.
Joseph Carpenter
Chapter Leader
Vasculitis Foundation in New Mexico
WHO: I am meeting some new members. Mary, plus her son John who is age 14 and diagnosed with
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.
WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.
It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.
We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.
What awareness activities would you like to help organize, and then participate in? Speak up!
Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.
Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.
Come one come all to the Jellicle Ball, but leave your cats at home just this once.
I REGRET NOT BEING ABLE TO ATTEND THE DECEMBER MEETING TONIGHT
Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.
I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.
POSSIBLE CHANGE IN 2012 MEETING FREQUENCY
Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.
REACHING OUT FOR HELP IN 2012
I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.
For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.
Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.
The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.
To become a member or make a donation now, go to these web pages:
RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES
How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.
First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.
Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.
So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.
IF WE BUILD IT, WILL YOU COME?
After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"
The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.
So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.
Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.
I am going to begin right now by arranging memberships for own my parents and siblings.
Wishing you a Happy Holidays,
Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation
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.
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.
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.
I hope to see some of you tonight, at Deli-Berry. I will be there at 6PM, and I will stay at least an hour. If someone joins me, we can stay as long as you like. If you cannot make a meeting, call me. I will be happy to meet for a drink sometime.
My agenda tonight is to solicit ideas about improving the Vasculitis Foundation website. I am on the committee to select the company which will redesign the website going forward, and I am very interested to hear your ideas about how things can be improved. If you cannot make it to the meeting, then please send me your thoughts in Email, or call me.
I want to take this opportunity to apologize to all of you for not posting to this blog during the past few months. I have answered phone calls and have been active in other ways, but not in ways that are apparent to most of you. Most of you never actually come to meetings, so it is an act of pure faith to keep holding them. I believe it is worthwhile for those times when someone does come. Sometimes it is a new patient with that deer in the headlights look, desperate for information on how to get started. Sometimes it is a chance to see one of my vasculitis friends, some of whom are becoming old friends. If and when you feel the need to participate in the vasculitis community, you can know that I and perhaps a few others will be there.
The flat fact is, I would love to see you. I feel that way every month at times like today, when I sit here wondering if anyone will show up and who they will be. I would love to see more patients, caregivers and friends of vasculitis come out to the meetings. Not only to share the practical knowledge about vasculitis, but also to break bread and share the day to day stories about your lives.
I would really like to get to know you better. If you have any interest in cultivating friendships with people that can actually understand what you are going through, I beg you to come out to the meetings, and get to know each other better. I beg you to respond to the Email group, and share those little things -- large and small -- that make us all who we are.
Do you sometimes consider the connection between how increased awareness about vasculitis directly impacts the available public funding for research? Then do you think about the obvious conclusion that more research would mean a greater chance that more and better treatments will be developed? Have you also considered that how you include vasculitis awareness in your day to day life is a huge part of that effort?
It is not the big things that make the most difference. Sure, we can organize some event to spread awareness. But I have learned that is very hard to do without any help. It requires a concentration of energy and money on a particular place and time for a limited effect.
The more effective approach is to wear it on your sleeve and tell everyone you meet your story. Do not hide from it, share it. When you have told your story a few times, it gets easier, and it really does make a difference. When you tell it enough, you can do it without relying on just the sad parts, or the hard parts, you can eventually related how even the challenges can bring light into your life. People will respond to those stories as they relate to you on a personal level.
Those people you touch carry your story with them, and they will tell it to others. They will remember your story when they vote on legislation that impacts health care, and they will remember your story when they have the chance to make other choices that impact chronic illness. Even if they never come directly in contact with a vasculitis patient ever again, your story will impact how they relate to other things in their lives which will ultimately spread those little ripples that will positively impact you. Put it out there in the universe, and it will come back to you in ways you cannot imagine possible.
As always, the Vasculitis Foundation is here to help you connect to each other, and to connect with more information. But you are a part of that process, and I need your help. Just talking with you helps me to help others. I will spend time this summer reconnecting with those of you who I have met, and connecting with some of our newer patients whom I have not yet met face to face.
This is a one day shift to accommodate my very busy Thursday. I work all day, then coach games for one team, then coach a practice for another team.
The February meeting of the Vasculitis Foundation in New Mexico will meet on Friday, February 18th at 6:00PM. The location is at our current home away from home at Deli-Berry.
Deli-Berry
2520 Juan Tabo Blvd. NE
Albuquerque, NM
(505) 508-0487
Please update your calendars. If you plan to attend, please let me know. If you plan not to attend, look on this as your opportunity to reply and let me know how you are doing. I have not heard from some of you in a while.
If the Friday meeting day works better for you, let me know and I can consider moving all the meetings to Fridays.
Looking for value added? I will bring DVDs of the 2011 VF Symposium presentations, and we can play selections from that. You have the option to buy them, and I will keep bringing them to meetings if showing them off manages to draw more people to the meetings. You have to show up to see them, or order your own set.
Following up on the last meeting, we have a potential Golf Tournament for Vasculitis in the works, so we might get some new news about that. We should also bring our thinking caps to come up with more awareness ideas. Mine is to commission a poster/TShirt for the NM Chapter that we can wear and/or sell at events.
I will have brochures, lapel pins, and T-Shirts for anyone who attends. Be there or be square.
Take the brochures back to your "other life" and spread the word. At your doctors, at your homes, and even at the grocery store! Tell everyone you know about vasculitis.
In college athletics, coaches demand a lot of their players. So, for Wake Forest's baseball coach, it was an easy decision for him to give something back to one of his players in need: The coach donated one of his kidneys.
"TIBERII: Kevin was a highly regarded baseball prospect coming out of Georgia, projected as a future major leaguer who could've made almost a million dollars from his first contract, had he skipped college and turned pro. But he didn't - committing to Wake Forest. However, Jordan got sick during his senior year of high school and doctors diagnosed him with ANCA vasculitis, a rare disorder where a person's white blood cells attack healthy tissues."
[There may be more to this story, like a more specific diagnosis, but it is a story worth sharing... -- Joseph]
You may or may not know that I also coach young athletes on two different basketball teams. The months between October and March, and especially January through March, tend to be very busy as I juggle my work schedule, my coaching schedule and try to keep my head above water on other projects.
The work I do for the members of the Vasculitis Foundation never stops, but during these months I am a bit less active than at other times. I beg your forgiveness for any perceived lapses, and I assure you I am available if you should need help with anything. Mostly that means if you want to talk, just reach out to me and I will make time for you personally.
I learned yesterday about another young patient. There is a boy, 13 years old in El Paso, TX, who has been diagnosed with Wegeners Granulomatotis. Even though El Paso is almost 5 hours away by car, I have invited them to participate in our chapter, which is the closest. In addition to Haley, 11, and Meaghan, 18, we have a few young adults in this chapter alone.
PS - Bonnie in Taos, no longer has the distinction of being the longest distance member of our chapter. Sorry Bonnie, but we still love you and I would love to hear how you are doing.
NEXT MEETING
I would also like to introduce a simple idea at the next meeting. What if we do one awareness event, even a simple thing, every month this year? We can think about a larger event for Awareness Week, but if we do one simple thing every month, then we will be spreading awareness. Start thinking of ideas folks, because to do this right I will need your help and the help of your family members. Nothing complicated, but I think we need to adopt a Just Do It attitude about awareness.
Our next meeting is on January 20th at 7PM. We will continue to meet at the Deli-Berry restaurant on Juan Tabo Blvd NE since that has been a comfortable place to meet and I personally love the food there. The sandwiches are great, or people can stick to coffee and tea, which are also excellent. Details about location, etc, are on the website http://www.nmvasculitis.org.
At the next meeting, in eleven days, whoever attends will plan something to do before the next meeting. Why not come join me and put your cards on the table too? Together we can think of something to do to promote awareness about vasculitis. I may introduce some suggestions in a later post, but for now, put your thinking caps on.
For example, here is one of mine... I would like to coordinate an art campaign. This chapter needs a logo, and I would like to inspire some artists to help create awareness posters with a Southwestern theme that I can then post at various businesses to help put the awareness message in front of the public eye. If you are an artist, and this appeals to you, please consider putting forward your best foot and showing us what you've got.
Everyone else, even if you do not plan to attend the meeting, send me your ideas please.
[To view this video, you have to look at this post online in a web browser. Email probably will not play the video. I have been told the microphone for this webcam (Logitech HD Pro Webcam C910) is very sensitive so if this sounds loud to you, feel free to use the volume control in the video player to adjust it according to your preferences. Also, this video is hosted in my SmugMug account, so if you have a video you would like to 'share with the class', please send it to me and I can host it for you privately.]
I am figuring out some new webcam technology, so I may either record some stuff at the meeting, and then later post it, or if I can get WiFi, the webcam, etc, all working, I may broadcast the meeting itself in Skype, Google Voice, or whatever works.
This technology exists, so it would be silly not to try and use it. At least that is how I see it.
This is great news for Bonnie in Taos, if she can tune in, and Jamie, who lives in Las Vegas, plus a few in Albuquerque who find it hard to come to the meetings in person, but might be able to participate remotely.
The next meeting is on Thursday, November 18th at 6PM. The location for Deli-Berry is 2520 Juan Tabo Blvd NE. On Juan Tabo, just north of Menaul Blvd NE, on the right hand side. You will see the Deli-Berry sign, and it is located in between a Sprint store and FedEx Office.
Most likely, I will try to braodcast the meeting in Skype, so to participate you will need a free account, and possibly a headset and/or a webcam. Once you have a Skype account, send me an Email with your Skype ID and I will send you my Skype ID in reply.
Here is some information about headsets and webcams, assuming you do not already have this equipment already installed on your computer.
If you have a newer MacBook, or pretty much any really new laptop, you may already have a webcam built in. In most cases, Skype will find it and use it automatically. But since I cannot possibly support all of the possible variables, you are going to have to sort that out. You may also find that an external webcam gives you better quality. The MacBooks are pretty good, but all others you will have to try them to find out.
Here is what I know...
For a headset only, you can do much worse than a Logitech ClearChat Comfort USB Headset (Black). Sample prices:
$31.99 on Amazon.com
$33.44 at Sears
$37.88 at Walmart
$39.99 at Target
There are other brands, like Plantronics for example, that are also dandy, but I am familiar with Logitech, so that is why I choose mention them. go to a store and compare for yourself. Try them on, and see what fits better for you.
USB connection gives you easy setup and great sound quality. Mostly, you just plug it in and it works. You may need to tell some software which microphone or headset to use, but it is pretty straighforward.
WHY NOT GO ALL THE WAY WITH A WEBCAM?
Or for practically the same money, you can go for the full boat with a web camera.
I am a big advocate for all vasculitis patients to get some kind of camera to record their stories as a way of spreading awareness. Just tell the camera the cleaned up version of what you tell your friends and family. It will go a long way towards making the public more willing to contribute time and money for this worthy cause.
But which camera?
I did a lot of research, and many cameras will work well. I personally like the Logitech cameras, because their is a nice A great compromise between quality and affordable price, plus I like how easy their software was to install.
Prices vary depending on how good you want the camera to be.
For most people I recommend the Logitech C310 HD Webcam. Again, good picture, good sound, and a good price. There are more expensive models, but this one will do the job quite nicely with very few compromises. Sample prices:
$39.99 at BestBuy
$41.99 at Amazon.com
$49.99 at Office Depot
$52.98 at Staples
Just as with the headsets, there are other brands that are also good, like Microsoft webcams are pretty good. I just choose to promote Logitech because I am familiar with them, they are easy to set up, and I like the software.
If you want to mimic my research, to see the quality differences, try starting with the webcam reviews at http://cowboyfrank.net/webcams/index.htm
He puts a number of different cameras through their paces. His most recent reviews are dated September 26, 2010, so they are not too old.
After doing the research, I like Logitech best. I chose that to give webcams to my family so we could all be on the same software as well. The Logitech Vid software is pretty nice and makes connecting a snap.
The webcam will work with any application that calls the camera and/or the microphone.
Google Voice/Video Chat
Skype
Logitech Vid software (Free to download and can be used with any webcam.)
Microsoft Live
Yahoo Messenger
etc, etc, etc, yadda yadda yadda
They all pretty much will work with most any USB webcam.
These better Logitech microphones, like on the C310, are noise cancelling, so you can use them to talk to people hands free instead of using a headset. You just turn down the volume enough to stop the feedback, then you can still hear the other party easily, and they can hear you too.
You can turn the camera part on and off as you choose. You get to turn that on and off in the software. Logitech software even has a feature to allow you to put a picture of your chooseing in place of a live camera feed. Handy for those days when you just don't want to be on camera, but still want to talk with people. Or when you want to turn the camera off for a few minutes to do something off camera, but still hear the other persons voice.
These are great tools for keeping people in touch, and at these prices, most people can afford them. In some ways, since the long distance over the Internet is free, you almost cannot afford not to take advantage of this technology to stay in touch with distant friends and relatives.
I am not trying to tell you what to do, but I will encourage you to share what you know.
Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico
If you follow the news for the Central NM Chapter of the Vasculitis Foundation, then you may recall I mentioned back in August that we have a unique fundraising opportunity coming up.
In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations."
With very little commitment and time, I, and one or two of you who may volunteer to go with me, will attend the Kick Off for the 2010 Combined Federal Campaign (CFC). This will give us the chance to personally represent the face of vasculitis to hundreds, or potentially thousands of federal employees who come to the kick off to decide how they are going to allocate their charitable donations. It is a sure winner, but only if we convince them that vasculitis is a cause worthy of their support.
You can help me help you by sharing your words with me. Simply write me a letter detailing your personal vasculitis story. The same story you must have told a thousand times. Tell me how you first knew you were sick, how you were diagnosed, and include some highlights, both good and bad, about that experience.
If you feel really generous, speak to the donors in your own voice and tell them why you think they should support research into vasculitis. If you optionally choose to share a photo, then I can add that to our display to show them there are real people affected by these terrible conditions.
If you know a friend or family member who has vasculitis, you can tell your version of their story. That will be good to show how vasculitis changes more lives than people realize.
I will read your stories, and without giving away your identity at all, I can use your stories to make sure we have plenty to say about vasculitis patients in New Mexico.
Even a few paragraphs will be very helpful. Do not hesitate, share your story today!
Some of you have told me your stories at a chapter meeting, but I need it in writing so I can get in my head good. That way the stories will be ready when I am standing there asking people to support vasculitis research. I want them to contribute, so that you can someday enjoy improved treatments, and hopefully also a cure.
Please send your stories to Joseph Carpenter by Email, Fax or Postal Mail. By jet plane or slow moving mule train. I will be doing more of these events, so if you don't get to it now, please get to it eventually. I will speak as the voice for those of you who cannot speak for themselves.
--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader
Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
