The American Dysautonomia Institute (ADI)* is a tax exempt charity pursuant to Section 501(c)(3) of the Internal Revenue Code. Contributions are deductible pursuant to Section 170 of the Code We were established in 2004.
We are actively seeking an increase in funding for the hubs of non-familial dysautonomia research. These facilities include, but are not limited to, the University of Toledo Medical Center (Dr. Blair Grubb), Center for Hypotension (New York Medical College-Dr. Julian Stewart), Vanderbilt Medical Center, National Institutes of Health (Dr. David Goldstein, chief dysautonomia researcher), and Mayo Clinic (Dr. Phillip Low, Dr. Philip Fischer, and Dr. Wolfgang Singer).
We seek two different sources for research funds--the federal government and the private sector (foundations, individuals, and for-profit corporations). We also provide a public service since our grant writing, grant administration, and legislative advocacy services are free.
To donate using our secure PayPal account please go to our Donate Now web page and click on Donate Via Credit Card On PayPal. Your donation is tax deductible, pursuant to Sec. 170 of the Internal Revenue Code, since we are an IRS approved nonprofit charity.
Our organization also strives to increase awareness of the existence of dysautonomia. In doing so, we hope to reduce delays in correct diagnosis and hasten the day when there will be effective treatment (and then a cure) for people with the disease.
More specifically, there was unanimous medical testimony before a Joint Congressional Dysautonomia Informational Hearing, in 2002. It noted that hundreds of millions of dollars each year are wasted on medical expenses regarding delays in the correct diagnosis of dysautonomia.
Accordingly, the waste of hundreds of millions of dollars a year is part of the reason for our mission, which is to increase awareness and education about dysautonomia. Promoting awareness will result in more prompt diagnosis, allowing people with the disease to have the best (but limited) treatment that is available.
In the meantime, the millions of Americans with dysautonomia are disenfranchised in terms of the limited levels of medical research. Moreover, most people with the disease, secondary to delays in correct diagnosis, are being treated for incorrect conditions.
As to this issue, most Americans who have dysautonomia are limited financially and physically in their abilities to advocate for funding. This creates a disastrous paradox. What is an additional few million dollars in requested research funds, compared to the billions of wasted in good faith efforts to correctly diagnose dysautonomia? There is also the priceless issue of the pain and disability of the victims of this dreadful, but largely unknown, disease.
The American Dysautonomia Institute (ADI) is funded by donations and grants. Devoted to reaching our goals is our primarily volunteer staff.
1. We are not a dysautonomia support group. This extremely important responsibility is being capably handled by other organizations.
2. We cannot refer people to specific physicians, recommend medical facilities, or offer any medical or legal advice.
3. We do not pay any fees to professional fundraisers. No one is authorized to use funds, raised for or by us, in a manner not approved by our primarily volunteer staff.
4. We do not have bottomless resources. While we advocate for all people with dysautonomia, we ask that people with the disease (and their friends and families) to make a tax deductible contribution to our efforts. Please see our "Donate Now" web page for further information.
5. Unfortunately, we do not have enough volunteers to be a hotline for patient complaints. However we are working hard, to increase disease awareness and research, so that one day dysautonomia patients will have easier access to quality medical care and many less complaints.
We cannot succeed without help from people who have dysautonomia. Thank you!
President Jon Stern has a B.A. from the University of Michigan. He is on the senior staff of a computer hardware and software-consulting firm.
Vice-President Shirlee Berman is a graduate of the University of Michigan Business School. After a stint as a database administrator, for the University of Illinois, Shirlee is now a software specialist in the private sector. Her previous volunteer experience includes database consulting, for Habitat for Humanity, in South America.
Director of Education is Zena Sulkes, PhD. Dr. Sulkes earned her B.A. from the University of Michigan, Masters from Wayne State, and Doctorate, in education, from the University of South Florida. Following a career as a school principal, Dr. Sulkes opened an educational consulting firm with a national reputation. She retired, as an adjunct professor of education, at the university level, in Florida.
Our secretary/treasurer/information resources volunteer is G. M. Chinitz. He has B.A., Juris Doctor, and Master of Library and Information Science degrees from Wayne State University. He was formerly the Grants, Foundations, and Law Collections Librarian for Macomb County, Michigan. He also serves as our research librarian.
Legislative advocacy activities are limited by Internal Revenue Service regulations. Therefore supportive Congressional contacts, by those not a part of our organization, are very important.
*We offer our special thanks to:
Our past treasurer, and consultant, Steven A. Siman.
Regretfully we cannot respond to individual requests for physician referrals or disease information. We are also not a hotline for patient complaints.
Disclaimer: If you have any health problem you should seek the assistance of a qualified medical professional. Our efforts, to raise funds for research and to increase dysautonomia awareness, are not a substitute for capable medical care. At the same time information cited, about problems with obtaining an accurate diagnosis, are historically accurate.
We regret that we cannot provide doctor referrals or specific medical information.
American Dysautonomia Institute
2135 Oakbrook Blvd.
Commerce Twp., MI 48390
Phone: 248-470-3992, FAX: 248-470-3992
7160 Shoreline Dr. #4112
San Diego CA 92122
2760 Night Hawk Ct.
Longwood, FL 32779
2114 West Walton Street
Chicago, IL 60622
1578 Dowden Ct.
Charleston, SC 29407
American Dysautonomia Institute (ADI)
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