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Dysautonomia International: POTS Research Fund

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Title:Dysautonomia International: POTS Research Fund Description: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 funded over $5M in cutting-edge POTS research, 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 research and find better treatments for individuals living with POTS! Each year we invite POTS researchers from around the world to apply for our POTS research grants. All research proposals are reviewed by independent experts, members of our Medical Advisory Board and Patient Advisory Board, and our 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. POTS Research Fund Studies Funded To Date 2025 Biomarkers of Neuronal Injury in Dysautonomia: Bridging Autonomic Dysfunction and Neurodegeneration Investigator: Brittany Adler, MD, Johns Hopkins University Autoantibodies And Sympathetic Dysfunction In POTS and Long COVID Investigator: Margot Maurer, PhD, Kings College London Hormonal profile in patients with POTS Investigator: Svetlana Blitshteyn, MD, University of Buffalo Jacobs School of Medicine and Biomedical Sciences High Resolution 7 Tesla MRI Exploring Brain Pathology and Inflammation in POTS and Long COVID Investigator: Peter Novak, MD, PhD, Harvard University/Brigham & Women's Hospital Double Blind Crossover Trial of Cromolyn and Gaunfacine for POTS Investigator: Malcolm Brock, MD, PhD, Johns Hopkins University Restoring Iron Deficiency to Expand Blood Volume and Improve POTS Investigator: Italo Biaggioni, MD, Vanderbilt University Medical Center Ultrasound Guided Stellate Ganglion Block in POTS Investigator: Anna Maria Bombardieri, MD, PhD, MSc, Stanford University The Long-Term Postural Orthostatic Tachycardia Syndrome Outcomes Survey - Gynecologic Findings: A Cross-Sectional Survey in Young Women Investigator: Jeffrey Boris, MD, Jeffrey R. Boris MD LLC Characterizing Co-Morbidities in Pediatric POTS and Orthostatic Intolerance Investigator: Jeffrey Boris, MD, Jeffrey R. Boris MD LLC Epidemiology and Economic Impacts of POTS in the US Military Health System Investigator: Glen Cook, MD, Walter Reed National Military Medical Center Validation of the Malmo POTS Score In Spanish Investigator: Pablo Guisado Vasco. MD, PhD, Hospital Universitario Quironsalud Madrid (Spain) 2023 & 2024 In 2023 and 2024, we continued funding multi-year grants that had been awarded between 2019-2022. During the early years of the COVID pandemic, many research studies were put on hold as hospitals shifted staffing to focus on acute COVID care. By 2023, most of the research projects were back on track. We also funded a small grant to support research on pediatric POTS in 2024. Long-Term POTS Outcomes Survey: Diagnosis, Therapy, and Clinical Outcomes Investigator: Jeffrey Boris, MD, Jeffrey R. Boris MD LLC 2022 A double blinded randomized placebo-controlled trial of plasmapharesis for treatment refractory POTS Investigator: Dennis Lau, MBBS, PhD, University of Adelaide Role of Ehlers-Danlos Syndrome in the Pathophysiology of Postural Orthostatic Tachycardia Syndrome: Role of Vascular Laxity Investigator: Satish Raj, MD, MSCI, University of Calgary Interrogating the Relationship Between Postural Orthostatic Tachycardia Syndrome, Connective Tissue Disease and Mast Cells in Eosinophilic Esophagitis Investigator: Joshua Weschler, MD, MSCI, Lurie Children's Hospital of Chicago Mechanisms of Exercise Intolerance in POTS Patients Investigator: Melissa Cortez, DO, University of Utah A systems immunology approach to dissecting the role of neutrophil netting, anti-GPCR abs and coordinate monocyte-driven inflammation in the development of POTS, both in the presence and absence of Sjogren's Syndrome Investigator: Nora Singer, MD, Case Western Reserve University Exploring Novel Autoantibodies in Patients with Postural Orthostatic Tachycardia Syndrome (POTS) and Sjogren's Syndrome Overlap Investigator: Tae Chung, MD, Johns Hopkins University Equipment grant to purchase a Transcranial Doppler Device for the Dartmouth autonomic lab Investigator: Nathaniel Robinson, MD, Dartmouth-Hitchcock Medical Center Equipment grant to purchase a Transcranial Doppler Device for the Johns Hopkins autonomic lab Investigator: Tae Chung, MD, Johns Hopkins University Equipment grant to purchase a Transcranial Doppler Device for the University of Utah autonomic lab Investigator: Melissa Cortez, DO, University of Utah Equipment grant to purchase a Transcranial Doppler Device for the University of Calgary autonomic lab Investigator: Satish Raj, MD, MSCI, University of Calgary Open-label prospective study for immune therapies in autoimmune gastrointestinal dysmotility (AGID) Investigator: Dong In-Sinn, MD, Stanford University (note, this funding came from our Dysautonomia Research Fund, but the study will include some POTS patients with AGID) 2021 Efficacy of Intravenous Immunoglobulin (IVIG) Treatment for immune-mediated dysautonomia and small fiber neuropathy Investigator: Steven Vernino, MD, PhD, University of Texas Southwestern Investigation of the Platelet and Activation of the Innate Immune System in POTS Investigators: William Gunning, PhD & Blair Grubb, MD, University of Toledo Phenotyping Mitochondrial and Immune Dysfunction in POTS with Target Clinical Intervention Investigator: Taylor Doherty, MD, University of California, San Diego Outcomes in Autoimmune POTS Investigators: Srikanth Muppidi, MD, Stanford University, Brent Goodman, MD, Mayo Clinic, Steven Vernino, MD, PhD, University of Texas Southwestern A Pilot Study of Low Dose Naltrexone Use in Postural Orthostatic Tachycardia Syndrome Investigator: Satish Raj, MD, University of Calgary Hemodynamic Biomarkers for POTS Using a Novel Continuous Beat-to-Beat Wearable Blood Pressure Monitor Investigator: Robert Sheldon, MD, PhD, University of Calgary 2020 Exploring Novel Mass Spectrometry Proteome Profiling for Identification of Potential Biomarkers in Postural Orthostatic Tachycardia Syndrome Investigator: Madeleine Johansson, MD, PhD, Lund University (Sweden) Network analysis in dysautonomia variables identified by iCPET, skin biopsy, QSART and tilt table Investigator: Rosa Pari Nana, MD, Brigham and Women's Hospital, Harvard Medical School Autonomic Complications of Post-COVID Syndrome Investigator: Nicholas Larsen, MD, Stanford University The role of neuronal nitric oxide in the regulation of resistance vessel tone in POTS Investigator: Sarah Evans, Cambridge University (UK) Impact of Ehlers-Danlos Syndrome Co-Diagnosis on Postural Orthostatic Tachycardia Syndrome Investigator: Satish Raj, MD, MSCI, University of Calgary (Canada) 2019 Head-to-head comparison of cell-based functional assay vs. epitope-based ELISA method for detection of GPCR-autoantibodies in POTS Investigator: Dr. Artur Fedorowski, Lund University (Sweden) Since the research based tests for adrenergic and muscarinic antibodies that have been detected in POTS patients are very time consuming and expensive, Dr. Fedorowski is leading a multi-center international study to determine whether existing commercially available antibody tests are accurate and reliable enough to be used to detect these antibodies in POTS patients. Long-term effects of transcutaneous vagal nerve stimulation on symptoms and cardiovascular autonomic profile of patients with postural orthostatic tachycardia syndrome (POTS) Investigator: Dr. Raffaello Furlan, Humanitas University (Italy) Dr. Furlan in Italy, in collaboration with investigators at Vanderbilt University in the US, will explore the use of an external vagus nerve stimulation device in treating POTS. The device is called NEMOS, and it is already approved in the EU for clinical use in epilepsy. Optimizing Vagal Efficiency to Improve Gastrointestinal Function in POTS: Effects of Auricular Neurostimulation Investigator: Dr. Katja Kovacic, The Medical College of Wisconsin (United States) Dr. Kovacic, in collaboration with investigators in at Harvard and University of London, will study the use of an external vagus nerve stimulation device in treating POTS. The device is called IB-Stim, and it is already approved in the US for clinical use in pediatric irritable bowel syndrome. Altered Nitric Oxide Metabolism in POTS Investigator: Dr. Laura Pace, University of Utah (United States) Dr. Pace will expand her research into the role of nitric oxide metabolism abnormalities in POTS, which may contribute to symptoms. Cardiac Structure and Function in Postural Orthostatic Tachycardia Syndrome: A Cardiac Magnetic Resonance Study Investigator: Dr. Satish Raj, University of Calgary (Canada) Dr. Raj will perform detailed cardiac imaging studies in POTS patients to determine whether there are signs of inflammation or other structural cardiac changes present. A Randomized Cross-Over Study of Propranolol Versus Ivabradine in Postural Orthostatic Tachycardia Syndrome Investigator: Dr. Robert Sheldon, University of Calgary (Canada) Dr. Sheldon will compare the efficacy of two different treatments used to reduce tachycardia and improve blood flow in POTS - ivabradine and propranolol. Ivabradine is harder to obtain private or government insurance approval for because it's a more expensive newer drug, but preliminary data suggests it may be very effective in reducing the tachycardia in POTS patients without dropping blood pressure. Immune-Phenotyping in Postural Orthostatic Tachycardia Syndrome Investigators: Prof. Lauren Stiles, Stony Brook University; Dr. Jonas Axelsson, Karolinska Institutet; Dr. Artur Fedorowski, Lund University Our 2019 annual conference study was an international collaboration taking the deepest dive into understanding the immune system in POTS to date. The study explored genetic, serum, whole blood, and urine markers in over 100 POTS patients. 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. 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. 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. 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 fogor cognitive dysfunction that many POTS patients experience. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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 a 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. 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. 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. How to Support This Important Research Donate by Credit Card Make a secure donation through our website. 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 a Facebook Fundraiser 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. 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. You can look up employers that offer matching grants at Double the Donation.
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