Friday, September 16, 2011

Reno, Nevada -September 15, 2011


I spent a magical evening in Reno, Nevada at the Whittemore Peterson Institute's 7th annual gala fundraiser. This event was attended by about 400 persons and is designed to both celebrate the work of the Institute and to raise money for research and treatment for ME. The evening unfolded over five hours with silent auctions, a cocktail time, dinner, awards and dancing. Music was provided by Nashville singer Suzi Oravec, including her version of "I hope you dance".

The atmosphere was serene and beautiful, with an unusually strong sense of sympathetic and deep community support for the WPI and its tasks. It was a pleasure to observe this.

The work of the WPI, particularly the research of Dr. Judy Mikovits, has lit the fuse on the explosion of interest in ME that has occurred over the past two years.

In the course of accepting the Outstanding Advocate award, I said the following:


I am most honored to accept the WPI's Outstanding Advocate award. In doing so, I pay tribute to the Institute and to the broad and varied forms of advocacy performed by so many dedicated people, each playing his or her part in the fight against neuro-immune illness disease the the WPI was created to combat.

My daughter, Alexis, is seriously ill with Myalgic Encephalomyelitis (better known as ME).

She has been housebound in St. Paul, MN for five years. Because of her deteriorating condition, I have had to move full time from my home in Philadelphia to help her. Our biggest problem is that she has no attending physician. She is unable to travel to an office and we have found no one willing to manage her care at home. I, a sculptor, make medical decisions for my daughter, based on telephone consultations with a web of physicians throughout the U.S, Canada and Europe.

One of the fundamental difficulties in dealing with this illness is this lack of ongoing medical care. Doctors for the most part do not believe the illness is physical or infectious, and in large part are unable or refuse to treat it. Another giant hurdle is the lack of coherent data. The WPI is dedicated to addressing these problems.

Patients with neuro-immune diseases are taken out of the game of life, and there is so little help. They, and their advocates and caretakers alike, are isolated from friends and family, and cut off from the usual avenues for medical care. Lives of patients and families are constrained, limited and indeed shattered by these experiences. An ME sufferer once said to me: "This is not the worst disease but it is among the cruelest."

I am here today because thd WPI is a bastion of hope for my family. I was in Reno in August 2010 for the dedication of the WPI building, and to help my son Peter make a short informational video for the WPI. In an interview for the video, WPI founder and President Annette Whittemore recalled a watershed moment. About the illness, she thought:

"Why isn't anyone doing anything? And you keep asking the question, and then one day you wake up and say, maybe that person is me, maybe that is what I am supposed to be doing."

Out of Annette's moment of revelation, the WPI was born.

In this chaotic world of illness-dictated living, my daughter and I are like an island detached from the mainland of life. The WPI is a new causeway, a bridge bringing less isolation, more cohesive research data and more treatment. Through the tireless work of Dr. Judy Mikovits and Dr. Vincent Lombardi, the WPI represents a new dimension: a new dynamic. The Institute's goal is to bring research data to the study of neuro-immune disease, and to provide a framework where doctors can accumulate and share treatment options.

The question I ask myself is what can I do to help?

Personally I do not believe the government is going to step in and help to find a cure for ME. Instead I think the future for research and treatment is as a private enterprise with private financing, like the March of Dimes. We cannot wait to be rescued. We have to do it ourselves. Increased scientific research and improved clinical medicine costs money.

Over the last two weeks I have contacted everyone that I know and everyone that my daughter, wife and sons know, and asked them to make a small donation to the WPI. In the course of this effort each of these individuals has learned more about my daughter's illness - and about the Institute that is working for a solution. Many people came forward (some with a little persuasion). All these people are new givers. All now know more about neuro-immune disease - and the WPI's work to find treatments that work. All of them will give in the future. In two weeks, I have raised $10,000.

I present my efforts as a demonstration, an example of what one person can do. Stringing a number of these smaller grass roots gifts together can meet achievable and valuable goals - hiring an additional lab technician, making informational videos for outreach, or financing small pilot treatment trials.

I ask that each of your consider acting as I have done to spread the word about the WPI and to increase knowledge of and support for the Institute's critical work. The need is so immediate and so great. Those whose lives have been destroyed by this illness deserve all the help we can muster. There is great urgency.

Thank you.


This modest effort at fundraising involved mostly non-ME related individuals. If some of my readership is interesting in joining this effort, you are most welcome and gifts are still coming in, with my name on the designation. I realize that many people already give to the WPI and in no way do I want to interfere with that, but there might be some who want to give an additional gift and I would welcome this. I also realize that many patients cannot afford to give and support the WPI in other ways, ways that are critically important.



16 comments:

  1. It was a pleasure meeting you, Chris. What you said about feeling like an island made me cry. I was so happy when I heard you were receiving this award, and I feel very lucky to have been present to see you receive it.

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  2. Congratulations, PA! You are indeed deeply deserving of WPI's Outstanding Advocate award. I'm so glad you're in our corner -- and of course WPI's corner.

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  3. I'm in awe of your resolute dedication to helping your daughter wade through the rivers of CFIDS. What a blessing you are!

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  4. Congratulations PA, a very worth recipient. In your quest to help your very sick daughter you are helping everyone with this wretched illness. Your significant efforts include keeping us informed by attending symposiums/workshops etc, giving your 'human' slant on what really went on, you decipher the mood into tangible words. As a patient with ME/CFS I thank and salute you.

    Julie Sowerby

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  5. the minority standing together on mass can become stronger and more powerful and push for change in this dreadful enigma that is ME.Well done PA and the WPI for rallying us all.

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  6. Congratulations, Chris, a well-deserved award.

    Your speech was deeply moving, and overall I feel great encouragement from the way things (and people!!) are coming together and achieving results against all odds.

    Thank you!

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  7. Thanks for all you do Chris. Your a great advocate for all those with ME and your daughter. You are an inspiration for sure. Thanks for raising funds for people with ME also. I agree wit what you say about not expecting the government to step up and save us.

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  8. Congratulations Chris and thanks for the report.

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  9. Ditto all the above. We love you, PA!

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  10. I cheered when I learned that you had been selected as Outstanding Patient Advocate by the WPI. A perfect choice. Your daughter's deteriorating condition may prevent her from being a poster child, but at least we now have a poster parent--and an additional $10,000. Thank you!

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  11. WOW. amazing fundraising, and a good model for others to follow.

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  12. It was such an honor to perform for the wonderful supporters of WPI. God bless all of you! xoxo ~Suzi O

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  13. An award well-deserved. Congrats, and much thanks for all you do!

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  14. Congratulations indeed! Thank you for everything you do for the community! So very well deserved & amazing what one person can achieve in raising funds! I salute you for everything you do, thanks!

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  15. Any chance that you could write a blog post about recent events and your take on them? You have raised funds and encouraged people to donate to the WPI. Do you still have faith in them? Do you instead support Dr Mikovits? What do you think of the results of the Blood Working Group? I appreciate you probably don't have more information than is currently available but you have met these people and must have some insight to share with us.

    nah

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  16. I have been looking into becoming a volunteer child advocate, however I am in an emotional turmoil trying to decide if is the right to do, since I've come from the same background. I am afraid to get too emotionally involved, but I know everyone's help is needed


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