About the POTS Research Fund
Dysautonomia International created the POTS Research Fund in December 2013 to create a dedicated stream of funding for POTS research. To date, we have issued over $949,000 in cutting-edge POTS research grants, more than any other non-governmental organization.
The more you donate, the more POTS research we can fund. Please make a contribution today to help us advance the pace of POTS research and find better treatments for those living with POTS!
Each year we invite POTS researchers from around the world to apply for our POTS research grants. We've received applications from five different countries, and we've funded research in the US, Canada and UK to date. All research proposals are reviewed by our Medical Advisory Board, Patient Advisory Board, and Board of Directors to ensure the funded projects are of high scientific value, and provide meaningful information that can improve the lives of POTS patients.
We're grateful to Philadelphia Eagles Quarterback Nick Foles and his wife Tori for their support of Dysautonomia International's POTS Research Fund, so we can fund research that helps Tori and millions of other people living with POTS!
Studies Previously Funded
June 2018 - Efficacy of Immunoglobulin in POTS
Investigators: Dr. Steven Vernino & Dr. Meredith Bryarly, UT Southwestern
Dysautonomia International collaborated with Drs. Vernino and Bryarly, as well as Dr. Brent Goodman at Mayo Clinic, to develop the first randomizd placebo controlled clinical trial of intravenous immunoglobulin (IVIG) infusions in individuals with POTS. The investigators seek to determine the efficacy of IVIG in treating POTS patients who have autoimmune biomarkers.
June 2018 - Phenotypic and genetic characterization of individuals with a rare disease spectrum disorder (POTS/EDS/MCAS)
Investigator: Dr. Laura Pace, University of Utah
While POTS is not a rare disorder, EDS is still considered a rare disorder, and the combination of POTS, EDS and MCAS may be uncommon enough to be considered a rare disorder. Dr. Pace seeks to identify genetic markers in families with multi-generational POTS, EDS and MCAS that may help us understand the genetic mechanisms that contribute to these overlapping disorders.
June 2018 - Vagus Nerve Stimulation in Treatment of Postural Orthostatic Tachycardia Syndrome
Investigator: Dr. David Kem, University of Oklahoma
Dr. Kem will study a non-invasive form of vagus nerve stimulation in POTS patients to determine if this treatment can improve orthostatic tachycardia and other POTS symptoms, and to determine whether vagus nerve stimulation can reduce the levels of circulating neural receptor autoantibodies in POTS patients, which may be contributing to POTS symptoms.
June 2018 - Brain Fog in Postural Tachycardia Syndrome: Multi-modal neural correlates
Investigator: Dr. Jessica Eccles, Brighton and Sussex Medical School
Dr. Eccles will perform functional MRI studies of the brain on POTS patients while conducting cognitive function studies to identify potential areas of abnormal neural functioning that may be contributing to the "brain fog"or cognitive dysfunction that many POTS patients experience.
June 2018 - Characterizing Nausea in POTS
Investigator: Dr. Jeffrey Heyer, University of Texas at Austin
Dr. Heyer will expand upon existing research on nausea in POTS, seeking to further elaborate on the gastric myolectrical, neurohormonal and autonomic changes that occur in tilt-induced POTS, and whether the same features occur in POTS patients during normal standing.
December 2017 - Microbiome in POTS
Investigator: Dr. Cyndya Shibao, Vanderbilt University
Dysautonomia International provided Dr. Shibao with a grant to do the first study of the gut microbiome of POTS patients, which may result in a better understanding of GI symptoms, immune dysfunction, and potential treatment approaches in POTS.
July 2017 - Epigenetic Mechanisms in POTS: Norepinephrine Transporter Expression
Investigators: Dr. Satish Raj, Vanderbilt University & University of Calgary and Dr. David Goldstein, National Institutes of Health
Dysautonomia International collaborated with Dr. Raj and Dr. Goldstein to collect blood and urine samples to measure catecholamine levels and RNA markers of norepinephrine transporter expression, which we hope may be useful as a blood test to help diagnose POTS someday. Learn more about the study.
July 2016 - Muscarinic Receptor Antibodies in POTS
Investigator: Dr. Steven Vernino, University of Texas Southwestern
Dysautonomia International partnered with Dr. Vernino to collect serum from 156 POTS patients during our 2016 annual conference, to screen for muscarinic receptor antibodies, which Dr. Vernino's lab found in over 90% of POTS patients in a preliminary study.
January 2016 - Dysautonomia Research Equipment Grant
Investigator: Dr. David Kem, University of Oklahoma
Dysautonomia International issued a supplemental grant to Dr. Kem's lab to purchase equipment needed to support their work on neural receptor antibodies in POTS and gastroparesis, which you can read more about below.
December 2015 - Vasomotor Neuropathy in POTS
Investigator: Dr. Roy Freeman, Harvard University
Dr. Freeman is widely known for his research on small fiber neuropathies. Prior research identified sudomotor neuropathy in approximately 50% of POTS patients. Sudomotor nerves control the sweat glands. Dr. Freeman recently discovered that some POTS patients have vasomotor neuropathy too. Vasomotor nerves control the dilation and constriction of blood vessels, which may play an important role in POTS. Dysautonomia International was pleased to provide Dr. Freeman's lab with a grant to study the role of vasomotor neuropathy in POTS and further the development of a standardized testing method to detect vasomotor neuropathy.
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-renowned neurouimmunology lab will further analyze the serum to identify other functional antibodies that impact the autonomic nervous system.
January 2015 - Meghan's Hope POTS Research Fellowship
Investigator: 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 Dr. Kem's 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. 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, finding that while g-AChR antibodies occur in POTS, they are found in low titers in POTS and healthy controls, and are thus not the likely cause of POTS when present in low titers.
|The abstract can be found here.|
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. The study identified, for the first time, that patients with POTS have a higher prevalence of autoimmune markers and co-morbid autoimmune disorders than the general population. One in four patients have positive ANA, almost one in three have some type of autoimmune marker, one in five have a co-morbid autoimmune disorder, and one in nine have Hashimoto's thyroiditis.
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. This study is still recruiting.
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." This study is ongoing, with results expected in 2017.
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 and Dr. Del Pozzi studied 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. The study determined that POTS patients also have a decreased response to nitric oxide in their brain. This study, Blunted cerebral blood flow velocity in response to a nitric oxide donor in postural tachycardia syndrome, was published in the American Journal of Physiology in May 2014.
Other ways to help support this important research:
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 Research Fund" in the memo line of your check your donation will go directly to fund POTS research.
Create an Online Fundraising Page
Create a personalized fundraising page on Facebook and ask your friends and family to donate to the POTS Research Fund. Be sure to let your friends and family know why the POTS Research Fund is important to you.
Host a Fundraiser
Hosting a fundraiser is a great way to raise awareness and raise money for research, like a Cupcakes for a Cure bake sale or a Dress Down Day for Dysautonomia Research at your school or office. Check out some other fundraising ideas for inspiration. Reach out to Kirsten Slowey, our Director of Events & Community Affairs, to find out how Dysautonomia International can help you make the biggest impact with your event.
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 Research Fund.