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Dysautonomia International POTS Research Fund
Projects Funded To Date:
July 2015 - Autoimmune Dysautonomia Panel & Thyroid Antibodies in POTS
Investigator: Dr. Wolfgang Singer, Mayo Clinic
Mayo Clinic researchers attended Dysautonomia International July 2015 annual conference to collect serum from POTS patients looking for neural and thyroid antibodies. A prior study from Mayo Clinic found one or more of these antibodies in 45% of POTS patients. Mayo's world-reknown neurouimmunology lab will further analyzing the serum to identify other functional antibodies that impact the autonomic nervous system.
January 2015 - Meghan's Hope POTS Research Fellowship
Laboratory of Dr. David Kem, University of Oklahoma
Researchers at the University of Oklahoma continue to pursue lab work related to alpha and beta adrenergic antibodies in POTS. Thanks to a generous private donor, by early 2015 we raised an additional $200,000 to hire additional staff and purchase equipment that will support their efforts to develop a diagnostic blood test and potential drug therapies targeting adrenergic antibodies. The Fellowship has been named after the daughter of the donor, Meghan, a young woman battling POTS.
July 2014 - Adrenergic Antibodies in POTS
Investigators: Dr. Satish Raj, Vanderbilt University & Dr. David Kem, University of Oklahoma
In July of 2014, we teamed up with researchers at Vanderbilt University and the University of Oklahoma to further investigate the role of adrenergic antibodies in individuals diagnosed with POTS. Rather than waiting for patients to visit research labs one at a time, we sped up the research process by about two years by inviting Vanderbilt's researchers to collect serum from volunteers at our annual conference and the samples were sent to Oklahoma for testing. Over 180 patients and healthy controls participated. Thanks to hundreds of individuals, families, businesses and organizations that donated, we reached our initial goal of raising $50,000 to fund this project in two months.
In a prior 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.
July 2014 - Ganglionic Acetylcholine Receptor Antibodies in POTS
Investigator: Dr. Steven Vernino, UT Southwestern
Vanderbilt's researchers collected enough serum from the 2014 conference study to send a small amount of serum from each study volunteer to Dr. Steven Vernino's neuroimmunology lab at the University of Texas Southwestern Medical Center to test for another antibody of interest, ganglionic acetylcholine receptor antibodies (g-AChR). Dr. Vernino is the world's foremost expert on g-AChR antibodies. These antibodies have previously been described in small numbers of POTS patients. Dysautonomia International supported the specimen collection through the earlier grant to Vanderbilt, and Dr. Vernino generously donated his lab resources and staff time to conduct this study. He presented his findings at the American Academy of Neurology meeting in April 2015. We will post details here soon.
December 2013 - Markers of Autoimmunity in POTS
Investigator: Dr. Svetlana Blitshteyn, University at Buffalo School of Medicine & Biomedical Sciences
Dr. Blitshteyn studied autoimmune serum markers in POTS patients and the rate of autoimmune co-morbidities seen in POTS patients. The resulting journal article, Autoimmune markers and autoimmune disorders in patients with postural tachycardia syndrome (POTS), was published in June of 2015.
December 2013 - Music Therapy in POTS
Investigator: Dr. Kamal Chemali, Eastern Virginia Medical School
Dr. Chemali is studying the use of music therapy in POTS patients who continue to be symptomatic despite maximized standard treatment. Music therapy has been used as an supplemental therapy in other neurological conditions, such as Parkinson's and Traumatic Brain Injury, to help improve functionality and reduce some symptoms. There is prior research documenting that music can be used to "entrain" the heart rhythm, either slowing it down or speeding it up based on the tempo of the music. Dr. Chemali will investigate whether this entrainment can be used to help POTS patients reduce their symptomatic tachycardia.
December 2013 - Modafinil and Cognitive Function in POTS
Investigators: Dr. Satish Raj & Dr. Amy C. Arnold, Vanderbilt University
Vanderbilt researchers are investigating modafinil, a drug with the potential to combat the cognitive impairment experienced by many POTS patients. Dr. Raj notes, "[m]any patients with POTS complain about cognitive impairment (sometimes called "brain fog"). For many patients, this is the most troubling part of their disorder. It can limit their ability to continue to work. Following Vanderbilt's work showing some objective problems on cognitive testing in POTS patients we are beginning to study treatments that may improve this debilitating problem."
December 2013 - Cerebral Blood Flow and Nitric Oxide in POTS
Investigators: Julian Stewart, MD, PhD & Andrew T. Del Pozzi, PhD, New York Medical College
Dr. Stewart's lab team will study cerebral blood flow in response to nitric oxide in POTS patients. Nitric oxide is an important neurotransmitter that plays a role in regulating the tone of blood vessels. Prior research has shown that POTS patients have a decreased response to nitric oxide in their peripheral blood vessels. This study will evaluate whether the decreased nitric oxide response is also occurring in the brains of POTS patients. Dr. Stewart is a Professor of Pediatrics, Physiology and Medicine and Director of the Center for Hypotension at New York Medical College. Dr. Del Pozzi is a post-doctoral trainee working in Dr. Stewart's autonomic lab at New York Medical College.
Other ways to help support this important research:
Create an Online 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.
Employer Matching Gifts
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.
Donate by Check
Print out this Donation Form and follow the instructions on the form to mail in your donation check. If you write "POTS Antibodies Research Fund" in the memo line of your check your donation will go directly to the Fund.