Monday, June 14, 2010

Where Are the Cures?

My husband attended an event last week where one of the speakers was multiple sclerosis patient and advocate Scott Johnson.  My husband brought Mr. Johnson and his organization, Myelin Repair Foundation, to my attention because they have a new and innovated approach to finding cures for diseases, and we share the same belief that "The system for making new drugs is BROKEN."

From their patient advocacy initiative website,
The Patient’s Manifesto
  • I believe that patients are not getting an adequate return on the billions of government, non-profit and industry dollars being spent on the research and development of new patient treatments.
  • I believe that academic scientists, government funding and regulatory agencies, non-profit disease research foundations, commercial biotech and pharmaceutical companies, and entrepreneurs should aggressively seek new ways to accelerate the pace of medical research and the development of new patient treatments for the billions living with diseases who can’t afford to wait.
If you agree with the above points, you can show your support by signing the Patient's Manifesto online.  I haven't read through the fine print of what their organization is all about yet, but I was excited to see that there are people challenging the current system and I feel a strong kinship with multiple sclerosis patients because for both diseases, very little is known about what causes them, and we share many of the same experiences that dealing with a chronic disease involves.

It sounds like Mr. Johnson started this organization because he was diagnosed with multiple sclerosis, and the wasn't satisfied with the options available to him.  Thanks for being another inspiration for our community, Mr. Johnson!  The acromegaly community is getting active and taking matters into our own hands, just like you!

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