LEGISLATIVE UPDATE

                           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 NFD.

     Of a positive note, some of members of Congress are starting to take note 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 NFD.

     However, from 2001 to 2008 there were repeated research funding cuts for the National Institutes of Health's Non-familial Dysautonomia section.  Therefore we are anxiously waiting for the day when Congress and the President jointly declare war on the greatest threat to our country, newly recognized diseases that kill or maim millions of Americans.  At the same time, we acknowledge and appreciate a more aggressive set of dysautonomia treatment and informational strategies that have been set forth, by the NINDS division of the National Institutes of Health (in conjunction with President Obama), for 2009 and 2010.

        Federal Research Budgets, For Forms Of Non-Familial 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.

                                             Further News     

     Our organization is making an ongoing effort to contact selected members of Congress. We are asking that each agree to support:

NFD disease information updates by the Centers for Disease Control and Prevention.  Establishing disease information access, especially via website and e-mail based updates, costs 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.  

     Senate  Developments                                  

     In July, 2002, a member of Senator Harry Reid’s staff attended the 2002 Joint Congressional Dysautonomia Information Hearing and was sympathetic with the need for massively increased NFD research.  However, NFD still does not have a strong senate advocate, in spite of the fact that each year the number of people suspected of having NFD grows.

     In this regard, introducing a bill supporting increased research for the over three million Americans with non-familial dysautonomia (NFD), 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 openess, to us, in 2009.                   

The ADI hopes that the 2010 and 2011 sessions of Congress will be more angelic as to the treatment of the non-familial dysautonomia (NFD) research budgets at the National Institutes of Health (NIH).  The NIH both conducts NFD research and finances NFD research in the private sector.  In both arenas, research budgets were cut from 2001 to 2008.

                                                                                                      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 non-familial dysautonomia (NFD) has spread (also for unknown 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 treatmet of NFD.