ADI Makes Annual Research Grants to the University of Toledo Medical Center
The ADI made its first annual grant (in 2015) to the wonderful Dr. Blair Grubb of the University of Toledo Medical Center. We made and will make further yearly additional funding grants (including in 2022).
Our grants have two intended purposes. The first is to fund research to help improve care options for people with dysautonomia. The second is to try to reduce the plague of delayed correct diagnosis, for people with the disease, by increasing health care provider awareness of its various forms.
Non-Familial Dysautonomia (NFD) and the Covid 19 Virus
There is some preliminary evidence that Covid 19 can cause NFD. Evidence is still very preliminary with the concept being compared to the mechanism that notes that mononucleosis can be a trigger for NFD.
Dr. Chip and Karen Mills Charitable Fund Support Our Research Efforts
The Mills Charitable fund has made a donation to us. The grant will be used to fund research with our partners at the Mayo Clinic and University of Toledo Medical Center. Our heartfelt thanks go out to the Mills.
Becker Trust Makes Research Grant
Dr. David Becker, of the Newton and Rochelle Becker Charitable Trust, has provided a grant to us, in support of our research efforts. The late Newton Becker had previously provided assistance as to disease awareness and funding efforts in Congress.
Berman Foundation Supports Our Grants to the Mayo Clinic
Our heartfelt thanks, to the Mandell "Bill" & Madeline Berman Foundation, for its matching support for one of our research grants to the Mayo Clinic. The late Mr. Berman has also helped us to advocate for increased federal medical research funding.
ADI Made Eighteenth Research Grant to Mayo Clinic
In 2021 we made our eighteenth annual research grant to the dysautonomia treatment section of the Mayo Clinic. In addition to first recognizing dysautonomia, in adults in 1993, 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.
Leaders of this ongoing research include Mayo Clinic's Dr. Philip Fischer and Dr. Wolfgang Singer. These physicians, and their associates, are speaking at medical conferences and publishing medical journal articles regarding dysautonomia. All of these efforts are significant steps on the long road to more widespread prompt diagnosis of dysautonomia and improved medical care options.
We appreciate the credit, given to our funding, in Mayo Clinic research journal articles and on audio-visual displays at continuing education presentations.
Research Grants to the Medical College of Wisconsin
We made seven research grants to the Medical College of Wisconsin.
Funding for the National Institutes of Health (NIH)
We have made a single grant to the NIH. When it assures us that further grants will be spent on non-familial dysautomia research we stand ready to consider making further funding efforts for it.
FDA Approves Additional Drug
The Food and Drug Administration has approved Droxidopa to treat neurogenic orthostatic hypotension, Many doctors and nonprofits provided input and support to obtain this approval.
CDC Makes Preliminary Commitment to Ramp Up Dysautonomia Disease Awareness Efforts
We were gratified to report that, in response to our requests and recommendations, we were contacted by a researcher at the Centers for Disease Control and Prevention (CDC). The CDC agreed to the importance of updating web based information, and its continuing medical education program, to provide diagnostic and treatment information about dysautonomia.
Moreover we are hopeful, that the fact that many people diagnosed with chronic fatigue syndrome actually have a form of dysautonomia, will be further relayed to health care providers by the CDC.
The CDC has indicated that it will work with the adult and children's dysautonomia research/treatment sections at the Mayo Clinic. It also stated that it will offer a continuing education course, noting that many people diagnosed with chronic fatigue syndrome (CFS) actually have a form of dysautonomia. This is much appreciated and a positive step towards correct diagnosis.
At the same time, we have recommended a specific health alert, stating that at least 25% of people diagnosed with CFS actually have dysautonomia. In this regard, on January 6, 2012, a CDC representative stated that one to four million Americans have CFS.
On a related note, we hope that other federal agencies will become more aggressive as to using no cost electronic notifications, to health care providers, as to the number of people who have dysautonomia, but have been misdiagnosed as having other physical conditions.
A continuing issue, as to increasing more prompt correct diagnosis, is the fact that dysautonomia is not covered in medical school or psychology graduate school curriculums, while it is covered in vet. school.
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. 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 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 dysautonomia) the prior acting director of the NIH advised that some of the research protocols, for which we have been advocating, have received some funding.
Accordingly, we thank the previous 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 has agreed, according to its deputy director, to adopt more of our database update suggestions to make information, about the types of dysautonomia, more easily accessible. It is also crucial to distinguish dysautonomia 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, 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.
Mayo Clinic Researchers Confirm That Many People Diagnosed with Chronic Fatigue Syndrome Have a Form of Dysautonomia
In the February, 2010 journal, Pediatric Neurology, Mayo Clinic researchers noted that:
.......Postural orthostatic tachycardia syndrome is increasingly recognized as a significant factor associated with chronic fatigue, particularly in adolescents. As many of 25-50% of adult patients with chronic fatigue syndrome demonstrate evidence of autonomic dysfunction, including postural orthostatic tachycardia syndrome . Patients with chronic fatigue syndrome were also noted to manifest abnormal thermoregulatory responses of the skin, both at rest and with skin cooling . (p. 79)
The recognition of postural orthostatic tachycardia syndrome derived from a subset of adult patients who carried a diagnosis of orthostatic intolerance, but who also exhibited an abnormal heart-rate response to a positional change. Postural orthostatic tachycardia syndrome was first reported in adolescents in 1999 by Stewart et al. , and affects millions of Americans, particularly young women  [emphasis added]. (p. 75) *Johnson J, Mack, J, Kuntz N, et.al. postural orthostatic tachycardia syndrome: a clinical review. Pediatric Neurology 2010;42(2):77-85.42(2):77-85.
To summarize, large numbers of people diagnosed with chronic fatigue syndrome have a form of non-familial dysautonomia. Accurate diagnosis is necessary for the correct treatment to be rendered.
Wal-Mart Supports Increasing Health Care Provider Awareness of the Many Types of 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 dysautonomia.
Wal-Mart's assistance will help reduce misdiagnosis and hasten the administration of the limited care options available for people with dysautonomia. Thank you Wal-Mart!
United States Financial Issues and Covid 19 Research Endanger Medical Funding for Non-Familial Dysautonomia
Hundreds of billions of dollars, pledged by the federal government to stem the 2008 federal economic disaster, made unclear the situation as to long term funding restoration needed due to prior federal research cuts to the National Institutes of Health (NIH). However, as part of a past stimulus package, President Obama increased the research budget at the National Institutes of Health. This supplemental appropriation, to the NIH, was a step in the right direction. Nevertheless, President Trump was not aggressive as to supporting research funding. We hope that President Biden will reverse course and increase research support for all pertinent diseases including non-familial dysautonomia (NFD).
The aggressive efforts towards recovery of our country's financial health, made by President Obama and President Biden, are appreciated. On the other hand, President Trump favored permanently reducing the budget of the National Institutes of Health, jeopardizing the well being and hopes for improved medical care as to all Americans. We trust that President Biden will support additional medical research funding (and not just as to the Covid 19 virus).
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 dysautonomia 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 librarian, that finding authoritative material about the types and symptoms of non-familial dysautonomia can still be 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 dysautonomia, 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 gratefully 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 dysautonomia 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 dysautonomia.
We Helped to Fund New Mayo Clinic Book About Non-Familial Dysautonomia
In 2021, in part using research grant funding from us, Dr. Philip Fisher, Professor of Pediatrics at the Mayo Clinic, authored Tired Teens, Understanding and Conquering Chronic Fatigue Syndrome and Pots. In this regard it is important to know that many people diagnosed, with chronic fatigue syndrome, in fact have non-familial dysautonomia.
Over Three Million Americans Have Non-Familial Dysautonomia
In 2002 the number of Americans, with dysautonomia, 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 "chronic fatigue syndrome" may have the autonomic nervous system disorder dysautonomia. In terms of fatigue, it can be related to abnormal blood pressure/vascular control/heart rate issues as to changes in position. These are the orthostatic intolerance or postural orthostatic tachycardia syndrome (POTS) types of dysautonomia. 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 dysautonomia caused inability of blood vessels to properly expand and contract with changes in position. Similarly, heart rates may sometimes be normal, even though a person in fact has POTS.
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 dysautonomia. 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.
Wall Street Journal Continues to Provide Inaccurate Disease Information
The Wall Street Journal, as late as March, 2011, has published articles about chronic fatigue syndrome. The last two articles do not mention that it is undisputed that many people diagnosed with chronic fatigue syndrome actually have dysautonomia. Moreover, dysautonomia has multiple potential viral triggers, far more than are suspected as to chronic fatigue syndrome. On the other hand, in 2020, the Journal reported that Covid 19 can trigger the development of dysautonomia.
Congress Supports Increased Autism Funding and Should Do the Same for Non-Familial Dysautonomia
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. Dysautonomia is tragically growing faster, we believe, than autism. However, dysautonomia research funding was cut several times prior to 2009. We pessimistically look forward to the 2021/2022 sessions of Congress further addressing this federal medical research crisis. On the other hand, we are grateful for the National Institutes of Health's increased awareness of the need to assist people with forms of 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.
American Dysautonomia Institute---Reaching for a Cure
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