ABOUT US

    The American Dysautonomia Institute (ADI) is a tax exempt organization pursuant to Sec.501(c)(3) of the Internal Revenue Code. Contributions are deductible under Section 170 of the Code.   

     We receive hundreds of requests for free medical advice and disease information, accompanied by complaints that it is difficult to locate physicians who treat non-familial dysautonomia, while our funding of research and attempts to increase federal funding of research unfortunately cannot be undertaken for free.

     We are actively seeking an increase in funding for the hubs of non-familial dysautonomia (NFD) research. These facilities include the University of Toledo Medical Center (Dr. Blair Grubb), Center for Hypotension (New York Medical College-Dr. Julian Stewart), Vanderbilt Medical Center (Dr. David Robertson), National Institutes of Health (Dr. David Goldstein, chief dysautonomia researcher), and Mayo Clinic (Dr. Phillip Low and Dr. Philip Fischer).

     We seek two different sources for research funds--the federal government and private institutions (foundations and for-profit corporations). We also provide a public service because 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 non-familial 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 non-familial 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 NFD. 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 NFD 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 NFD 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 non-familial dysautonomia? There is also the priceless issue of the pain and disability of the victims of this dreadful, but largely unknown, disease.

     Devoted to our goals is our highly qualified staff. They include a biopsychologist, attorneys, librarians, doctors, a grant writer, an accountant, legislative experts,  computer consultants, disability advocates, and educators.  In this regard, over 95% of our budget goes directly to funding research, increasing the disease awareness of health care providers, and advocating for increased NFD research funding (both by the federal government and private foundations).

     The American Dysautonomia Institute (ADI) is funded by donations and grants. 

                                           What We Are Not

1.  We are not a NFD 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 fundraisers or charge for our advocacy activities. No one is authorized to use funds, raised for or by us, in a manner not approved by our staff. 

4.  Unfortunately, we are a small organization that does not have bottomless resources.  While we advocate for all people with non-familial dysautonomia without charge, we ask that people with non-familial dysautonomia, 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 awareness and research among doctors, so that one day, NFD patients will have much better access to quality medical care and many less complaints.

     We cannot succeed without help from people who have NFD.  Thank you!

                    Our Officers, Executive Director, and Volunteers

             President Jon Stern has a B.A. from the University of Michigan.  He is the chief executive officer of a computer hardware and software-consulting firm with locations in Michigan and California.  Jon, like all officers, is neither paid nor receives expense reimbursement.

            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.

            Treasurer/Secretary Steven Siman possesses a B.A. from Michigan State University and Doctor of Law degree from Wayne State University.  He is the attorney for a Southeast Michigan Ronald McDonald House and operates his own corporate law practice.

           Our founding  Executive Director, J. A. Chinitz, retired in February, 2010.  We have honored her with emeritus status.  J.A. is a Phi Beta Kappa biopsychology graduate of the University of Michigan.  While still an undergraduate she was a researcher at the Mental Health Research Institute of the University of Michigan Medical Center.  She co-authored a journal article, as to PET scans and post-traumatic stress disorders, in conjunction with Jon-Kar Zubieta, MD, PhD and other Medical Center staff members.  
            
            Director of Education is Zena Sulkes, PhD.  Dr. Sulkes earned her B.A. from the University of Michigan and doctorate, in education, from the University of South Florida.  Following a career as a school principal, Dr. Sulkes opened an educational consulting firm that has developed a national reputation.  She recently retired, as an adjunct professor of education, at the college level, in Florida.

            Our donor relations/information resources volunteer is G. M. Chinitz.  He has  B.A., J.D., 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 served as our research librarian until his retirement.  Prior nonprofit experience includes a stint as a volunteer fundraiser for the Centers for Disease Control and Prevention Foundation.

            Legislative advocacy activities are limited by Internal Revenue Service regulations.  Therefore supportive Congressional contacts by others, as to federal dysautonomia research budgets, are very important for people with non-familial types of dysautonomia.

*We offer our special thanks to:

1. Our attorney, treasurer, and consultant, Steven A. Siman,  Steven A. Siman, PC, 3250 W. Big Beaver, Suite 344, Troy, MI 48084, 248-643-4700.

2. Our accountants and consultants, Bryan Kearis, CPA & Pam Robins, CPA, The Rehmann Group, 39300 W. Twelve Mile Rd., Suite 100, Farmington Hills, MI 48331, 248-579-1100.

                             Internal Revenue Service Filings

      Review of any Internal Revenue Service 990 and/or 501 (c) (3) letter may be undertaken as follows:

       1.  Request copies, by letter, enclosing a stamped self-addressed envelope with four dollars postage pre-paid.

       2. Via phone request, to our Michigan office, to schedule an appointment for review between 9 a.m. and 5 p.m. on Fridays or Sundays.  Up to two weeks advance notice may be required.

(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 funding for research and to increase non-familial dysautonomia awareness, are not a substitute for capable medical care. At the same time information cited, about problems with obtaining an accurate diagnosis, have been historically accurate.