American Dysautonomia Institute (ADI)
QUALITY OF LIFE AND DEATH FOR MILLIONS OF AMERICANS
Please write to President Donald Trump, The White House, 1600 Pennsylvania Avenue NW, Washington, DC 20500. Request increased research funding for non-familial dysautonomia (NFD). Note that the risk of having NFD is far, far greater than being the victim of a foreign act of terror.
Remember that past dysautonomia medical research cuts, at the National Institutes of Health, imperiled both the quality of life, and life itself, for millions of Americans.
Contact Information for the House of Representatives and Senate Majority/Minority Leaders, plus your own specific members of Congress, can be found at www.house.gov (House of Representatives) and www.senate.gov (Senate). Request increased research funding for non-familial dysautonomia (NFD). Note that you have two senators and one representative. If you call ask to speak with their staff member in charge of health care and the budget for the National Institutes of Health.
It is crucial, to get on board our support team, Congressional Republicans who oppose universal health insurance and/or increased research funding for the National Institutes of Health.
ADI Hopeful For More Effective Help
Almost any member of Congress could introduce helpful funding legislation. We trust that members of the House and Senate will take more aggressive action to assist the growing number of Americans who have dysautonomia. In this regard, we originally contacted a variety of members of Congress, as to increasing dysautonomia research funding. These efforts were not fully successful. Thereafter we shifted our focus to already ongoing work to increase disease awareness and fund more research.
Of a more positive note, some of members of Congress are starting to understand that newly discovered conditions, or diseases that are rapidly spreading for unknown reasons, require special attention. This is the situation as to autism. We hope that the increasingly enlightened view of the necessity to address the plague of autism will soon apply to non-familial dysautonomia.
In the past there were repeated research funding cuts for the National Institutes of Health's dysautonomia section. Nevertheless we anxiously await the day when Congress and the President jointly declare war on the greatest threat to our country, newly recognized diseases that afflict millions of Americans.
Federal Research Budgets, For Forms Of Dysautonomia, Remain Unknown
Although we remain appreciative of the efforts of the National Institutes of Health, and its sub-division the National Institute of Neurological Disorders and Stroke (which deals with dysautonomia), the amount spent for research (per year) for scores of diseases remains unknown. Since there are limited research dollars, to allow for a fair and transparent allocation of research money, the amount spent for various diseases must be determined and publicized.
This is especially important since many members of Congress tell us that they defer to the National Institutes of Health as to disease research budgets. If the amounts are unknown to the National Institutes of Health and to Congress they remain unknown to anyone. We do not say this with harshness, noting that the accounting issues are complex, but note that fundamental fairness and rationality (as to research budget allocations) can only take place in an atmosphere in which disease research budgets are known.
Our organization has made past efforts to contact members of Congress and their staffs. We have asked that each agree to support increased dysautonomia research funding. We need your help----that is calling or writing, to your members of Congress, and asking for an increase in yearly dysautonomia research budgets.
On the other hand, electronic and web based information updates, by the Centers for Disease Control and Prevention and National Institutes of Health, cost nothing. Establishing disease information access, especially by website and e-mail based methods, also cost nothing.
Comment Regarding Federal Government Strategy
Former presidential chief of staff, the late Hamilton Jordan, repeatedly declined the honor of a political appointment to the advisory board of one of the National Institutes of Health. In doing so, he noted the importance of actively encouraging/pressing the federal government to increase funding to the National Institutes of Health, while trying to influence the allocation of research money to areas of urgent special need.
In the past, a member of now retired Senator Harry Reid's staff attended a Joint Congressional Dysautonomia Information Hearing and was sympathetic for the need for massively increased dysautonomia research. However, dysautonomia needs new and stronger Senate advocates, noting that each year the number of people correctly diagnosed as having dysautonomia grows.
In this regard, introducing a bill supporting increased research for the over three million Americans with dysautonomia, costs nothing. At the same time we are not ignoring the fact there are many legitimate claims for limited research funding. We also appreciate the National Institutes of Health outreach and openness to us.
The ADI hopes that the 2018 and 2019 sessions of Congress will be more supportive as to the treatment of the dysautonomia research budgets at the National Institutes of Health (NIH). The NIH both conducts dysautonomia research and finances dysautonomia research in the private sector. In both arenas, research budgets were cut in the past. They are unknown, at least to us, for 2009 to 2018.
House of Representatives Developments
Contrary to the comments about not favoring one disease over another, many members of the House, seeing the crisis as to the growing number of cases of the spectrum disease autism, voted for massive and specific increases in autism research funding.
We applaud the efforts to give special consideration to autism, as members of our staff individually make donations to autism research. At the same time, tragically, the plague of dysautonomia has spread (also for not fully understood reasons) faster than autism. Therefore, we hope that more members of Congress will recognize the cost effectiveness of supporting increased research to help improve the diagnosis and treatment of dysautonomia.
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