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 disease that 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 six 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 caregivers 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 the 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 director 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 goals are 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 that 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 cost 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 contribution 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 on a solution. Many people came forward (some with a little persuasion). All of 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 trials.
I ask that each of you 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.
A note to readers: My hearing has improved dramatically over eleven weeks of treatment so far. I will write more about it as soon as I can. Thank you for the incredible support and kindness you have shown me this year.