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Dysautonomia International POTS Antibodies Research Fund
|Dysautonomia International has teamed up with researchers at Vanderbilt University and the University of Oklahoma to further investigate the role of adrenergic antibodies recently identified in individuals diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). To fund this groundbreaking research, we created the POTS Antibodies Research Fund.
Thanks to hundreds of individuals, families, businesses and organizations that donated, we reached our initial goal of raising $50,000 in two months! This means we have raised enough to implement the next phase of the POTS antibodies research project at Vanderbilt and the University of Oklahoma, which took place during our July 11-14, 2014 conference. We have been contacted by other researchers interested in studying antibodies in POTS patients, so we will keep the Fund open to help support additional research in this area.
Create a Personal Fundraising Page
You can create a FirstGiving personalized fundraising page and ask your friends and family to donate to the POTS Antibodies Research Fund. Simply visit the Dysautonomia International FirstGiving page to get started. You can view a sample FirstGiving page. Be sure to let your donors know why the POTS Antibodies Fund is important to you.
Host a Fundraiser
Hosting a fundraiser is a great way to raise awareness and raise money, like a Cupcakes for a Cure bake sale or a Dress Down Day for Dysautonomia Research at your school or office. Ask your employer if they will contribute matching funds to charities that you donate to. This is great way to double your donation to the POTS Antibodies Research Fund.
In a fascinating study, Autoimmune Basis for Postural Tachycardia Syndrome, published in the Journal of the American Heart Association on February 25, 2014, University of Oklahoma and Vanderbilt University researchers found adrenergic receptor antibodies in all 14 POTS patients that participated in the study. The researchers found evidence that these antibodies may cause the abnormal blood pressure and tachycardia seen in POTS. These same antibodies were previously found in individuals with Orthostatic Hypotension. You can find a plain English explanation of this research on the Dysautonomia Dispatch blog.
What will the POTS Antibodies Research Fund money be used for?
Dysautonomia International is an all volunteer 501(c)(3) non-proift. All of the funds contributed to the POTS Antibodies Research Fund will be used to support research on these newly discovered POTS antibodies. "During the second stage of this research, we will look for these antibodies in a larger group of POTS patients and we will investigate whether POTS patients with other medical conditions, such as Ehlers-Danlos syndrome, Sjogren's syndrome, and other diagnoses, also have these antibodies," explains Dr. Satish R. Raj, Associate Professor of Medicine and Pharmacology at the Vanderbilt University Autonomic Dysfunction Center and a member of the Dysautonomia International Medical Advisory Board. Dr. David Kem, George Lynn Cross Research Professor of Medicine at the University of Oklahoma Health Sciences Center, notes, "we intend to use some of the information gained from this second stage study to help develop a commercially available blood test, so that POTS patients can easily be tested for these antibodies by their local doctors. We are also working to develop targeted immunotherapy drugs for POTS patients who have these antibodies."
Can I donate by check?
Sure! Please print out this Donation Form and follow the instructions on the form to mail in your donation. If you write "POTS Antibodies Research Fund" in the memo line of your check your donation will go directly to the Fund.
What antibodies are involved in this research?
The antibodies involved in this research are alpha1 adrenergic receptor autoantibody, beta1 adrenergic receptor autoantibody, beta2 adrenergic receptor autoantibody, and muscarinic 3 receptor autoantibody. These receptors are sometimes known as alpha1, beta1, beta2 and M3. These receptors are integral to the proper functioning of the autonomic nervous system.
Do all POTS patients have these antibodies?
We don't know yet. In the initial study, all 14 of the 14 POTS patients tested had the antibodies; 7 patients from Vanderbilt and 7 from the University of Oklahoma. The patients were not pre-selected as being likely to have antibodies. Some of them had viral infections prior to the onset of their POTS, but some did not have any obvious viral infection before developing POTS. As explained by Dr. Raj above, the purpose of the follow up study is to evaluate a larger group of POTS patients, to see what percentage of POTS patients have these antibodies and to see if these antibodies exist in POTS patients that have other health conditions, such as Ehlers-Danlos Syndrome.
Can my doctor order a test for these antibodies?
Not yet. There is no commercial test available for these antibodies and the Vanderbilt and University of Oklahoma researchers cannot accept requests to test for these antibodies at this time. The researchers hope to develop a blood test for these antibodies so that POTS patients can easily be tested for these antibodies by their local doctors. As soon as a POTS antibodies blood test is available, we will post it on the Dysautonomia International Facebook page.
How can I get involved with POTS research?
If you have been diagnosed with POTS, please sign up for the POTS Research Registry. The more POTS patients that sign up for the registry, the faster POTS researchers will be able to recruit patients for future studies related to these antibodies, and other areas of POTS research too. There is no obligation to participate in research once you sign up for the Registry. Signing up is just a way for researchers to know that you are interested in being contacted about research opportunities that may become available.