From ME/CFS patient Justin Reilly:
There is a silver lining in winning less than $100K in that we are eligible for the $200K discretionary spending prize. (There is also an additional $300K in discretionary spending for which I believe all the charities in round 2 are eligible).
I sent the following letter in case anyone wants any ideas. Thanks to Ann from whom I borrowed some wonderful phrasing!
Dear Chase Community Giving,
I am a Chase customer. I support Whittemore Peterson Institute in the CCG contest. I am writing you to let you know how great WPI is and urge you to award them some of the discretionary contest funds.
I have had ME/CFIDS for ___ years. 17 million people worldwide have this devastating neuroimmune disease, with virtually no viable treatment options and little bona fide research.
That is, until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art Institute to research neuroimmune disease. As the New York Times noted, comparing WPI to Michael J. Fox's Foundation and others, "Harvey and Annette Whittemore were not the first to start a research foundation out of desperation to find answers for an incurable disease... But few if any of the private groups have produced notable results as quickly as the Whittemore Peterson Institute has."
Unfortunately, the Whittemore family can no longer cover all of the Institute's costs alone. WPI needs help raising money that will all go toward desperately needed research for a cure. This is where you can help. Please award this most deserving of charities as much of your discretionary funding as possible!
Thank you for your consideration.
Sincerely,
I am a Chase customer. I support Whittemore Peterson Institute in the CCG contest. I am writing you to let you know how great WPI is and urge you to award them some of the discretionary contest funds.
I have had ME/CFIDS for ___ years. 17 million people worldwide have this devastating neuroimmune disease, with virtually no viable treatment options and little bona fide research.
That is, until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art Institute to research neuroimmune disease. As the New York Times noted, comparing WPI to Michael J. Fox's Foundation and others, "Harvey and Annette Whittemore were not the first to start a research foundation out of desperation to find answers for an incurable disease... But few if any of the private groups have produced notable results as quickly as the Whittemore Peterson Institute has."
Unfortunately, the Whittemore family can no longer cover all of the Institute's costs alone. WPI needs help raising money that will all go toward desperately needed research for a cure. This is where you can help. Please award this most deserving of charities as much of your discretionary funding as possible!
Thank you for your consideration.
Sincerely,
(Charities awarded a Round 2 grant of $100,000 or more in the current program are not eligible to receive the $200,000 Advisory Board grant)
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Healkick, the forum for ME/CFS patients under 40, has added new features:
• IM Chat (private and public). "Many patients have said it’s the first time they’ve actually talked to another patient," says Cari Lea, who co-founded Healkick with Joey Tuan.
• Language friendly. You can choose the language of your choice to read posts. No more struggling to read the forum in English.
• Patient Map. "Every member that joins the site enters where they live," explains Cari Lea. "It all gets put on our Patient Map. So patients can see who lives near them, and find patients they can meet up with or at least find some local support--something that is very hard for most of us to find."
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Justin, thanks for writing that letter. This is what I sent to Chase:
ReplyDelete***
To the Advisory Board of the Chase Community Giving Contest,
I'm writing to tell you about the Whittemore Peterson Institute for Neuro-Immune Disease, a charity that is worthy of receiving extra funds from you. I hope you'll select this group to present its Big Idea.
The Whittemore Peterson Institute is doing groundbreaking research on treatments for ME/CFS, the neuro-immune disease from which I have suffered since 1994, when I was 20 years old.
My life has been utterly devastated by ME/CFS. I described my daily struggles in testimony I presented this year to the Chronic Fatigue Syndrome Advisory Committee, which advises the Secretary of Health and Human Services. I wrote:
"Due to my extreme post-exertional fatigue, muscle weakness, and orthostatic intolerance, I’m forced to spend 95% of my time lying on my back on this mattress in my small bedroom with one window. I haven’t been able to take a shower since 2005—not even with the help of a shower chair. I bathe and clean my teeth in my bed. Once a month my elderly mother washes my hair for me in the bathtub.
"My parents bring all of my meals to my room on a tray. If I want to go to another upstairs bedroom I have to be pushed in my wheelchair. I haven’t been able to go downstairs or outside since November. I’ve gone years at a time unable to leave my home, even to see a doctor. I’ve had periods of being incapable of feeding myself. I spend my worst days immobilized and unable to think, watching my bedroom get light, then dark, then light again. Outside my window, the seasons change, over and over.
"My incapacity is not unique. One of my friends with ME/CFS hasn’t been able to leave her home in seven years and can’t walk; she uses an electric wheelchair to get to the bathroom. Another needed a catheter in her bladder because she couldn’t get up at all. Other friends are so weak that they can’t lift a cell phone or speak above a whisper. I’m lucky that my parents are supportive; some of the worst off have no financial or physical help from their families. This intersection of severity and poverty turns their lives into a hellish struggle for food, shelter, and other basics of survival."
I hope you will read my full testimony at http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_anonymous3.pdf.
Of all the diseases represented by charities in your contest, ME/CFS is the only one for which there are no approved medications or treatments. We have been left to suffer in our beds by our government, which devotes more money to the study of hay fever than to ME/CFS. The Whittemore Peterson Institute, in contrast, is dedicated to finding causes and treatments for ME/CFS.
In 2009, the WPI published a paper in Science that found a new human retrovirus--XMRV--in 2/3 of patients with ME/CFS. Even though this finding has been confirmed by groups at the FDA, NIH, and Cornell University, the WPI has received zero federal funds. Developing antiretroviral and other treatments for ME/CFS depends on private financial resources.
We in the patient community are incredibly grateful that the WPI has received $65,000 from Chase. That money will go directly into research that will help me resume the life I planned as a teenager.
Back then, I dreamed of graduate school, a career, marriage and a family. Though it's not too late for me to fulfill these dreams, my fantasies now are a little simpler. Before another decade passes, I would love to be able to take a shower, get dressed, walk down the stairs, and emerge from my house into bright sunlight, where I will smell the lilacs in bloom.
By awarding $200,000 to the Whittemore Peterson Institute, you would help me live that dream. Thank you.
Sincerely,
wow, Anonymous #3, thank you for another lyrical and eloquent testimony. Powerful words at CFSAC and powerful words again here in your letter to Chase. Your words conjure both visual and olfactory images vividly. I can almost smell the lilac bushes in your garden. Thank you for devoting your literary talent to helping us all.
ReplyDeleteDid you see this? Regrettably Science is asking the WPI to retract their study:
ReplyDeletehttp://online.wsj.com/article/SB10001424052702303745304576355852212887170.html
Mindy, thank you for posting my plea here!
ReplyDeleteAnon, thanks for sharing your powerful story with us and Chase!
Unfortunately, the fact that Science has asked the Lombardi et al. authors to (without just cause, imo) retract their paper probably means it's much less likely that WPI will get any money from Chase or anywhere else. : (