 |
 |
Hi, Bruce, The following is a copy of the letter I sent Oprah last September. Please feel free to lift any of it you feel would be helpful. Good luck. September 3, 1998 Harpo Productions P.O. Box 909715 Chicago, IL. 60607 Dear Oprah, In looking at your topics, my suggestion is for a show on the issues involved concerning people with Parkinson's Disease would encompass most of them: Healing Yourself, Making Dreams Come True, the Enormous Debt caused by PD, a cure would certainly Bring me Happiness, a cure would Change Life by the Yr. 2000, and I would like the Financial Freedom from medical expenses and the fear of nursing home costs, and so forth! A program about people with Parkinson’s Disease would provide a dynamic show. It has: 1. Strong visuals. 2. Stories of heroic struggles. 3. People taking charge of their own lives despite hardships. 4. A tremendous economic toll both personal and to the taxpayers. 5. A community that is reputed to be the most informed about their disease. 6. Hope for the future because a cure is in sight with sufficient funding. My story is only one of millions. When I was 44 years old I was diagnosed with Parkinson's disease and my family has watched as the disease has progressed over the past 12 years. Parkinson's is a progressive neurological life-altering disorder that destroys the brain cells controlling voluntary movement. The available treatment only partially alleviates the resulting muscle stiffness, tremor, slowness of movement and loss of balance as well as memory loss, depression, lessened facial expression, freezing episodes, and loss of voice power that can eventually leave its victims unable to walk, to talk, or even to move. For the past 12 years I've been Vice-President of the Parkinson Foundation of Harris County. Among other things, I write a monthly newsletter that is distributed to over 1700 families. I've chaired several fund-raisers--the last being the "Knock-out Parkinson's with Mohammed Ali" Gala which netted over $125,000 and is being used for research and community outreach. I am enclosing a video tape that was one of the results from this endeavor, with a letter that was posted on a Parkinson Internet site. I want to be able to continue to contribute to my community, but I've seen my co-workers robbed of their ability to work because of the progression of their disease. I know that without a cure I and millions of others will join my co-workers in total disability. Until recently, my medications (which cost $500 a month) have allowed me to live an "almost" normal life. But now the disease has progressed to the point where the medications don't always work. Today I can feed and dress myself, but the time to find a cure is running out for me. A day doesn't pass that allows me to forget that I have Parkinson's disease and that I don't know what tomorrow will bring. I spent a year recovering from a ten-hour back fusion caused in part by my Parkinson's gait. Then due to the Parkinson's, I fell and fractured a kneecap. My grandson just celebrated his 5th birthday while I watched the party from the sidelines, because it was an "off" day. The medications didn't work and I couldn't move. There are times I can't hold my two year old granddaughter for fear I might fall with her or drop her. I want to be able to play with my grandchildren. I don't want them to remember that their Grandma couldn't move, or talk or smile. In addition to the human suffering it causes, Parkinson's is financially crippling our nation. According to a study done at Duke University, the US economy loses about 25 billion dollars a year (that is more than $68,000,000.00 a day) to maintain about one million Americans who have Parkinson's disease. The majority of the expense comes in the later years of the disease. Our U.S. Government pays out a substantial part of that from our taxes--a conservative estimate might be 20% of it, or five billion dollars a year ($13,600,000.00 a day). Parkinson's stands to affect millions more than the 1-2 million people in the United States today when the Baby Boomers, now age 51, reach 57, the average age of diagnosis. This aging Baby Boomer generation will greatly increase that toll, putting additional stress on the Medicaid, Medicare and Social Security Disability systems. And 60,000 new cases are diagnosed each year…one every nine minutes. The public needs to know. Four long years ago, Parkinsonians and their caregivers launched a valiant grass roots effort to pass the Morris K. Udall Bill for Parkinson's Research and Education. In November 1997, the Bill was finally enacted as an amendment to a larger appropriations measure. The Parkinson's community rejoiced, thinking that at long last the $100 million approved for research would soon be granted, but we are still struggling with Congress to appropriate the funding so that the benefits of that research can become a reality. This past June I joined with others affected by Parkinson’s in Washington, DC to participate in the Parkinson's Action Network's fifth annual Public Policy Forum. We "Parkinson's Activists" heard about the latest research and learned how to approach Members of Congress. Until recently, we have been invisible. We are not paid lobbyists, but we cared enough to make our voices heard. We suffer with this disease daily. So many of us have bravely labored to see the Morris K. Udall Parkinson's Research bill passed, because scientists have told us that with enough funding they anticipate finding a cure within 3 to 5 years! This battle could be quite a story and could also be part of a larger story on how the National Institute of Health is not stepping up to the neurological diseases associated with advancing age which will become the scourge of the Baby Boomers. There is a window of opportunity now that will not be there as Parkinson's and the other neurodegenerative diseases become more prevalent. I can only imagine the number of decisions you must make regarding the selection for a show, but my life as well as the lives of millions who may have already lost the ability to write or speak out in their own behalf could be helped by the exposure a show on PD could provide. YOU hold my life and the lives of millions like me, in your hands. YOU have the power to help find a cure for Parkinson's by increasing public awareness and helping us put pressure on Congress to fund the Udall bill. PLEASE, Oprah, help us get our lives back! Thank you. Sincerely, Nina Proler Brown Bruce Anderson wrote: > Does anyone think there is still interest in some of this group attempting > to get on the Oprah show for the publicity? Or is she not as popular > anymore? > > I learned recently that an old girlfriend of mine has gone into a joint > venture with > her. Well, not girlfriend, exactly - I dated her in high school. Well, > not > dated her, exactly - I had one date with her, and it was not a particularly > successful one, from my particularly male point of view. But it's a > connection! > > Actually, it's a much better one than it sounds. Our families were close - > our now elderly > mothers were best friends and we spent many holidays together for many > years. I last saw her about twelve years ago or so at her brother's > wedding. > > Her name is Geraldine Laybourne. She created the Niclelodeum children's TV > network and she was its CEO until she left head Disney / ABC Cable a > couple of > years > ago. She now heads something called Oxygen Media, which is a joint venture > between Gerry, Harpo Productions [Oprah spelled backwards, and her operating > company], and America Online [I don't THINK General Motors is involved!] > > Anyway, Gerry is a real publicity hound - go into any multi-engine search > > engine and you get literally hundreds of "hits" on her and she has been > often quoted as saying Oprah is her hero. It appears she not only met her > but has gone to work with her. > > I am certain I would at least get a response from her if I wrote describing > my plight and the plight of all PWPs, explaining our inability to get to > Oprah and how we feel this type of show with a bunch of real characters [you > guys!] would be a natural , etc. We were friends for a long time. My > problem is this: I need some help with this letter. Dear Gerry, Remember > me? blah, blah, blah. Can someone help me out and draft the business end of > it? Briefly giving the facts of PD, costs of not finding the cure, the > doublecross by congress, and how entertaining I think it could be, maybe > mentioning we have a whole bunch of all kinds of well-spoken folks who have > already agreed to be on TV should the occasion arise? Maybe somehow stress > women - Oxygen Media is going to concentrate on women oriented cable TV and > Webster. > > Just another crazy idea, but I would definitely need help.