Margaret Tuchman on DBS and Stem Cell Research


I was diagnosed with Parkinson’s disease at the age of 38 and have lived with it for over 20 years.

Parkinson’s is a very personal disease. Diagnosis, the rate at which the disease progresses, and the reaction to medications are all unique to the individual. Although my disease progressed very slowly, after ten years I hit a plateau where the major medication for PD, Levodopa (Sinemet), began to cause reactions that were worse than the symptoms of the disease. The next five years bought an unexpected turn of symptoms and responses. I tried all sorts of medications and combinations of medications with varying doses, but the disease progressed and the medication caused the quality of my life to be so uncertain that I began to research surgical resolution to my problem. In December of 2000, I underwent Deep Brain Stimulation (DBS) of the sub-thalamic nucleus (STN) at New York University Hospital. DBS/STN may stop the progression of the disease and may even have some neuro-protective benefits. Although this is not a cure, it allows me the days and months of living my life more fully and being able to devote my time to raise funds for Parkinson’s research.

The possibility of finding a cure is what keeps me going, and recent developments in the area of stem cell research have been truly exciting.

The promise of stem cells derived from in vitro fertilized eggs lies with their ability to differentiate into any human cell type. Early research results have demonstrated the promise of new treatments and cures for humanity’s most devastating diseases. Researchers could potentially generate insulin producing islet cells for patients with juvenile diabetes; neurons to treat Parkinson’s disease, ALS, Alzheimer’s disease, and repair spinal cord damage; and bone marrow cells to treat cancer—just to name a few possible applications.

That’s why I am deeply concerned that that the Bush Administration could take action that would delay or halt stem cell research. Only with the support of the substantial resources of the federal government will researchers be able to translate the promise of stem cell research into treatments and cures for millions of Americans suffering from devastating diseases. The promise that research into stem cells holds cannot be realized through the support of private funds alone.

I urge the support of the NIH Guidelines that allow the Federal funding of research using human pluripotent stem cells derived from excess fertilized eggs from the in vitro fertilization process. I recognize that regulations are necessary to ensure the ethical standards of this and all research, and I support the NIH released guidelines as providing clear, ethical safeguards to conduct this research.

I applaud Rep. Rush Holt for supporting stem cell research, and I am very grateful that Orrin G. Hatch, Strom Thurmond, Gordon Smith, Connie Mack, and others in Congress are taking a stand in support of stem cell research. It is vital that we all make our voices heard and that that President Bush allows this research to continue.

The men, woman, and children suffering from life-threatening diseases are engaged in a race against time. The results of President Bush’s decision on stem cell research could literally mean the difference between life and death. I implore you to join the petition to President Bush to permit federal funds for stem cell research.

Margaret Tuchman,
President of The Parkinson Alliance

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