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Review for In Need of Diagnosis, Orlando, FL, USA

Rating: 5 stars  

I have had the privilege of knowing Marianne Genetti, serving on the Advisory Board, and watching INOD grow from its inception. Have you seen the movie, “Extraordinary Measures”? My wife and I saw it this week. Besides being a compelling story with good actors, the movie illustrates several points relevant to INOD. First, the people with untreatable or undiagnosed illness are very much alone with their illness. Doctors, co-workers, friends, and the public do not really understand. Second, the movie shows that financial profit determines whether a treatment is forthcoming. What the movie does not show is the additional isolation that those “in need of diagnosis” experience. In “Extraordinary Measures,” at a critical point when John Crowley needed a large sum of money quickly fund treatment research, he was able to reach out to those who had a child with Pompe Disease. Those who suffer from an undiagnosed disease have no such support community, no one to reach out to in order to raise money, and no one else who truly understands their lonely struggle. INOD, therefore, is very much needed because it supports the undiagnosed in many tangible ways, is creating a support community, and is working to bring to the attention of NIH and the medical community the need for attention directed to the need for better diagnosis. How many of the undiagnosed suffer from an alternate presentation of a known disease, how many suffer from an unrecognized combination of diseases, and how many suffer from an as yet undiagnosed disease? We need “In Need of Diagnosis.” It is the only voice of the undiagnosed. And, like John Crowley, Marianne Genetti has a personal stake in the undiagnosed, which continues to motivate her to find answers and help others. If you have not seen “Extraordinary Measures,” see it. If you have not explored, do so. And, I encourage you to get involved in INOD, either by volunteering or donating. John Tatum, M.D.

I've personally experienced the results of this organization in...

As stated above, I have worked closely with the director since the inception of the nonprofit.

What I've enjoyed the most about my experience with this nonprofit is...

Seeing its birth and development and seeing the many people who have already been helped.

The kinds of staff and volunteers that I met were...

Very dedicated

If this organization had 10 million bucks, it could...

Reach more of the undiagnosed, provide more help for the undiagnosed, help create a medical specialty of Diagnosis, and help fund needed research in the area of diagnosis.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?


Role:  Board Member & Serve on the advisory board.