NEWS----NEWS----NEWS            

                          Progress At The National Institutes of Health

         After five years of interplay with the National Institutes of Health (NIH), we received three significant, and much appreciated, letters from it in 2009.  One, from the director of one of its divisions, the National Institute of Neurological Disorders and Strokes, reflects, for the first time from a high level NIH official, that millions of Americans have forms of non-familial dysautonomia.  This comment is a major step towards increasing disease awareness and justifying a more equitable research budget.

       Moreover, although the research expenditure accounting, at the National Institutes of Health (NIH) could be somewhat more transparent (in terms of disclosing specific research spending for non-familial dysautonomia) the prior acting director (now deputy director) of the NIH advised that most of the research protocols, for which we have been advocating, have received some funding for 2009 and 2010.  This will eventually assist some of the over three million Americans, most still misdiagnosed (and most women or girls), who have a form of non-familial dysautonomia.

         Accordingly, we thank the deputy director (previously acting director) of the NIH for his kindness, patience, and follow through as to our inquiries and advocacy.

         Additionally, the National Library of Medicine has gradually been updating medical subject headings following some of our recommendations.  It now has agreed, according to its deputy director, to adopt more of our database update suggestions to make information, about the types of non-familial dysautonomia (NFD), more easily accessible.  It is also crucial to distinguish NFD from familial dysautonomia.  Accordingly, we express our gratitude to the National Library of Medicine, including its deputy director.

         Furthermore, extrapolating from the past testimony of NIH researchers, plus physicians who spoke at the 2002 Joint Congressional Dysautonomia Information Hearing, over 1.5 billion dollars (in 2002 dollars) is wasted each year in misdiagnosing and mistreating forms of non-familial dysautonomia.  In this regard, the recent correspondence from the National Institutes of Health gives us increased hope, that over the next few years, this wasted amount of money will be reduced and more prompt correct diagnosis will increase.

         Accordingly, our heartfelt thanks for the material that we received from the then acting director of the National Institutes of Health (Raynard Kington, M.D. Ph.D,) the director of the National Institutes of  Neurological Disorders and Stroke (Dr. Story Landis), and the deputy director of the National Library of Medicine.  By the way, with the appointment of a new director of the National Institutes of Health, we are fortunate that Dr. Kington has resumed his position as its deputy director.

            Covidien Corp. Makes Second Donation to Am. Dys. Institute 

        Our thanks to this medical supply and research corporation for the generous multple donations from Covidien itself and its staff. 

                Wal-Mart Supports Increasing Health Care Provider

          Awareness of the Many Types of Non-Familial Dysautonomia

     Secondary to a generous grant from Wal-Mart, we were able to edit, publish, and distribute a limited edition edited book, intended for physicians, to help with the diagnosis and treatment of the multiple types of non-familial dysautonomia.

      Wal-Mart's assistance will help reduce misdiagnosis and hasten the administration of the limited care options available for people with NFD.  Thank you Wal-Mart!

             Sub-Prime Mortgage Disaster May Endanger Federal  

                                 Medical Research Funding

     Hundreds of billions of dollars, pledged by the federal government to stem the growing mortgage related/credit disaster, make unclear the situation as to long term restoration of prior federal research cuts to National Institutes of Health (NIH).   While active federal action, in support of the economy, is admirable, we look forward to Congress and the President continuing to note the importance of federal medical research.  The large supplemental appropriation, to the NIH, was a step in the right direction.

      As to this situation, it is essential to remember that disease is as much a threat, to "Homeland Security," as acts of terrorism.

     At the same time, the aggressive efforts towards recovery of our country's financial health, made by President Obama and Congress, are appreciated.  We hope that as they succeed, including the ten billion dollar stimulus package to the NIH, the result will be continued adequate medical research funding, including for non-familial dysautonomia.

                     ADI Makes Third Research Grant to Mayo Clinic

     In July, 2009 we made our third non-familial dysautonomia (NFD) research grant to the adolescent NFD treatment section of Mayo Clinic.  In addition to "discovering" NFD, Mayo physicians actively provide care to people with the disease, teach other physicians about the condition, and are at the forefront of efforts to find more effective treatment methods.

     One leader of this ongoing research is Mayo Clinic's Dr. Philip Fischer.  Dr. Fischer and his associates are increasingly speaking at medical conferences and publishing medical journal articles regarding non-familial dysautonomia (NFD).  All of these efforts are big steps in the long road to more widespread prompt diagnosis of NFD and improved medical care options.

      Moreover, we appreciate the credit given to the American Dysautonomia Institute, by the Mayo Clinic, as to our financial support of the research behind Mayo's NFD related medical journal article in the February, 2009 issue of PACE.

                 More on the National Library of Medicine Updating Research

                                      Databases At Our Request

     Using some of the grant funds that we received from the Serling Philanthropic Foundation, we made repeated and specific proposals to the National Library of Medicine to make searching for information, about non-familial dysautonomia, easier.  We recommended that major forms of non-familial dysautonomia (NFD) be cross-referenced and distinguished from familial dysautonomia.

       In the past, some of our proposals have been adopted.  Moreover, with the assistance of the acting director of the National Institutes of Health, in July 2009 we were advised (by the deputy director of the National Library of Medicine) that more of our suggestions will be adopted. In this regard, we know from contacts with physicians, and efforts by our research librarians, that finding authoritative material about the types and symptoms of non-familial dysautonomia is still quite difficult.  However, we appreciate the remedial actions taken, and proposed, by the National Library of Medicine (NLM). 

       It is crucially important that the NLM  (a division of the National Institutes of Health) help lead the way in making information more accessible as to how to diagnose NFD, including its various sub-types.     

   ADI Receives Generous Donation from the Serling Philanthropic Foundation

     Our heartfelt thanks, to the Michael and Elaine Serling Philanthropic Foundation, for its totally unexpected grant to us.  We also greatfully appreciate Ms. Dana Serling's nominating us for consideration.

     We have used the funds, among other projects, to work with the National Library of Medicine to add types of non-familial dysautonomia (NFD) as a formal research subject headings, with cross-references to the various forms of the disease.

     Secondary to the help of the Serling Philanthropic Foundation, the MedlinePlus database (part of the National Library of Medicine) has been and will be further updated as to the different forms of NFD.

       American Dysautonomia Institute Makes First Research Grant To

                                 National Institutes of Health

     In 2009 our organization made its first research grant, for non-familial types of dysautonomia research and increasing health care provider disease awareness, to the NINDS division of the National Institutes of Health.  We appreciate the NINDS division and National Institutes of Health providing us with updates as to research and educational activities related to dysautonomia. 

                           Founder of Popular Children's Group

                      Diagnosed with Non-Familial Dysautonomia

     In November, 2006 Greg Page, a founding member of the internationally popular children's group, The Wiggles, courageously announced that he has stopped performing due to orthostatic intolerance (a type of non-familial dysautonomia). 

Mr. Page, the wonderful yellow Wiggle, is pictured at left.  His public comments, about non-familial dysautonomia, will go a long way towards increasing public and health care provider awareness of the existence of the disease.  It is growing, for reasons not fully understood, at a rate faster than autism.        

            Over Three Million Americans Have Non-Familial Dysautonomia 

     In 2002 the number of Americans, with non-familial dysautonomia (NFD), was  estimated at about one million.  However, researchers at the Mayo Clinic (supported by colleagues at other medical centers and the director of one of the National Institutes of Health) now confirm that over three million Americans have the disease.

     Moreover, many people diagnosed with migraine headaches, irritable bowel syndrome, or unexplained fatigue may also have the autonomic nervous system disorder non-familial dysautonomia (NFD).  In terms of fatigue, it can be related to abnormal blood pressure/vascular control as to changes in position.  This is the orthostatic intolerance type of NFD.  However, blood pressure readings can be normal, taken in either arm, while blood pressure to the brain and other internal organs is insufficient due to the NFD caused inability of blood vessels to properly expand and contract with changes in position.

     Accordingly, it is very important to take repeated blood pressure readings (in different body positions) and have a tilt table test performed and interpreted by a physician familiar with NFD.  In this regard, the leading cause of blood pressure control problems, after essential hypertension, is dysautonomia caused orthostatic hypotension.  Orthostatic hypotension can manifest itself in a variety of symptoms, including fatigue, headaches, pooling of blood in the legs, and gray outs.

         International Medical Conference Assists Non-Familial Dysautonomia

The November, 2006 International Symposium on the Autonomic Nervous System included presentations about non-familial dysautonomia.  We hope that such activities, in which researchers at the Mayo Clinic have been especially active, will increase disease awareness, reduce misdiagnosis, and result in advances in treatment strategies.

                            Congress Supports Increased Autism Funding

     The ADI applauds those members of Congress who have voted for large increases in funding for autism awareness and research.  This much needed legislation is a refreshing contrast, to the statements of some Representatives and Senators, that they will not tell the National Institutes of Health on what conditions to spend money.

     As to this situation, when the number of people with a specific disease grows at a plague-like pace, special Congressional attention is certainly justified.  Non-familial dysautonomia is tragically both growing faster than and has more victims than autism.  However, NFD research funding was cut several times prior to 2009.  Yet we optimistically look forward to the 2010 and 2011 sessions of Congress further addressing this federal medical research crisis.  We are also grateful for the National Institutes of Health's 2009 and 2010 increased awareness of the need to assist people with forms of non-familial dysautonomia.

     In the interim, we compliment those members of Congress who voted for increased autism funding and supported an autism postage stamp.  The postage stamp is an excellent way to increase disease awareness.             

                   Michigan Supports Educating Health Care Providers

                                  About Non-Familial Dysautonomia

     Michigan's first gentleman, Dan Mulhern, has provided wonderful assistance as to the the war against delayed correct diagnosis of non-familial dysautonomia.  Secondary to his efforts, the Governor's staff has:

1.  Contacted the director of the Michigan Department of Community Health about the crisis in diagnosis and care for non-familial dysautonomia

2.  Circulated information to the director, provided by and/or recommended by us, to assist county community health departments (and private health care professionals) in more easily recognizing the symptoms of and more promptly diagnosing non-familial dysautonomia.            

American Dysautonomia Institute---Reaching for a Cure