Your contribution will go twice as far during our 2025 Holiday Matching Grant Challenge!

Thanks to the generosity of Fisher Global Foundation and the Louisa Adelynn Johnson Fund for Complex Disease every donation made before December 31st is being DOUBLED, up to $400,000, multiplying your impact on dysautonomia research. Together, we can make a meaningful difference in the lives of millions living with autonomic nervous system disorders. Now is the perfect time to give and make 2x the impact!

Intravenous Immunoglobulin (IVIG) Clinical Trial in POTS Patients with Sjogren's
Principal Investigator: Dr. Steven Vernino, UT Southwestern
Dysautonomia International is already funding the first IVIG clinical trial in POTS, led by Dr. Vernino. He has proposed expanding this study to include another group of patients who have POTS and Sjogren's syndrome. While IVIG is often used to treat Sjogren's patients with neuropathies, like the small fiber neuropathy found in POTS and Sjogren's, there has never been a formal clinical trial to document whether IVIG really works. It is our hope that the study data will demonstrate efficacy, which will help patients obtain government or private insurance coverage for IVIG. Right now, a lot of doctors are trying to order it for their autoimmune POTS or Sjogren's patients, but insurance denies coverage because there is no solid research proving it works. The Sjogren's Foundation has generously contributed $50,000 towards this $150,000 study. Your contribution helps us raise the remaining $100,000!

Investigation of the Platelet and Activation of the Innate Immune System in POTS and Long COVID
Principal Investigators: Dr. William Gunning & Dr. Blair Grubb, University of Toledo
This study will compare platelet function and innate immune system inflammatory markers like TNF-alpha in people with POTS, people who have recovered from POTS, people with Long COVID, and healthy individuals for comparison. Platelets are one of the first lines of defense against viruses and other microbes. Dr. Grubb and Dr. Gunning have previously found that most POTS patients have abnormal platelets due to a deficiency of granules in the cells, which contain many chemicals that signal other cells to defend the body from infections. This can be inherited but can also be the result of long-term inflammation. This study will better characterize platelets and inflammatory markers in POTS and Long COVID, and may provide a biochemical target for future treatments.

Sodium Channel Mutations in Inherited Dysautonomias
Principal Investigators: Dr. Malcom Brock, Johns Hopkins University and Dr. Frank Bosmans, Ghent University
Autonomic disorders like POTS, orthostatic intolerance, neurocardiogenic syncope, and hyperhidrosis (excessive sweating) often run in families. Drs. Brock and Bosmans have been following 69 families with patterns of multiple shared symptoms associated with dysautonomia, including POTS, orthostatic intolerance, chronic fatigue, hyperhidrosis, chronic itch, and generalized anxiety. They performed whole-exome sequencing in these families with preliminary data suggesting a relationship between autonomic dysfunction, and mutations in voltage-gated sodium (NaV) channel genes. Voltage-gated sodium channels play a critical role in nerve messaging, and sodium channel mutations have been found in other neurological disorders, like sensory neuropathies. This study will further expand this research to better characterize the role of sodium channel mutations in autonomic dysfunction, with the goal of developing treatments that improve sodium channel function in affected patients.

A Pilot Study of Low Dose Naltrexone in POTS
Principal Investigator: Dr. Satish Raj, University of Calgary
Low dose naltrexone (LDN) has been demonstrated to improve fatigue and reduce symptoms in chronic fatigue syndrome and fibromyalgia, and has also been reported to have anti-inflammatory benefits. LDN has never been formally studied in POTS. This will be the first placebo-controlled clinical trial of LDN in POTS. LDN is a relatively low-cost drug with few side effects, but many clinicians are reluctant to prescribe it since it hasn't been formally studied in POTS. Our hope is that if the data shows LDN is effective in mitigating POTS symptoms, this treatment will be more widely available to patients, and will be included as one of the options to consider in POTS treatment guidelines.

Hemodynamic Biomarkers for POTS Using a Novel Continuous Beat-to-Beat Wearable Blood Pressure Monitor
Principal Investigator: Dr. Robert Sheldon, University of Calgary
Dr. Sheldon and colleagues have developed a tiny, wearable blood pressure monitor that can be placed behind the ear, which could change how dysautonomia patients are diagnosed, how they manage their disease, and how we study autonomic disorders in real-life settings. This device can measure heart rate and beat to beat blood pressure. This study will explore whether this device can accurately measure cardiac stroke volume, by comparing the device in people with POTS (who tend to have reduced stroke volume) and healthy controls, using real-life data from the device and MRI imaging of cardiac function. The study will also help us learn more about cardiac function in POTS, and whether changes in heart rate, blood pressure and stroke volume during the day, at night, or in other real-life settings, influence POTS patients' symptoms. It is our hope that this research will demonstrate the research and clinical usefulness of this device, so that it may become more widely available to patients, doctors and researchers.

Characterization and Intervention Studies in Patients with Postural Orthostatic Tachycardia Syndrome and Inappropriate Sinus Tachycardia Associated with Post-Acute COVID-19 Syndrome
Principal Investigator: Dr. Marcus Stahlberg, Karolinska University
The overall purpose of this project is two-fold. First, the researchers aim to describe the biological mechanisms and identify potential novel therapeurtic targets in Long COVID patients with cardiovascular autonomic dysfunction (postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, tachycardia not meeting the POTS or IST criteria) and microvascular endothelial dysfunction. Long COVID patients from clinics around Sweden will be screened using tilt table and other autonomic testing, mast cell activation syndrome biomarkers, lipidomics, proteomics (mass spectrometry), stress-perfusion cardiac MRI, assessment of endothelial function, 6 minute walk test, quality of life and other self-reported screenings from the time of Long COVID diagnosis until four years after diagnosis. The second stage of the study includes randomized placebo controlled, double-blinded clinical trials assessing the efficacy of various interventions, including ivabradine, naltrexone, fulvic acid and enhanced external counter pulsation (EECP). The goal is to deliver rapid evidence-based treatments and to discover novel therapeutic targets that can benefit other Long COVID, POTS and IST patients.

Phenotyping Mitochondrial and Immune Dysfunction in POTS with Target Clinical Interventions
Principal Investigators: Dr. Taylor Doherty and Dr. Pam Taub, UC San Diego

Previous research has shown evidence of inflammatory and autoimmune markers in POTS. In several other diseases, persistent inflammation and autoimmunity have been linked to mitochondrial dysfunction, but this has not been studied in POTS yet. In this study, the researchers hypothesize that some POTS patients have mitochondrial and immune dysfunction that causes energy imbalance in the body and problems with immune system regulation. They will test this hypothesis by measuring mitochondrial function, inflammation, and immune cell exhaustion in POTS patients before and after undergoing a lifestyle intervention called time-restricted eating (TRE) in which patients eat during a 10 hour window each day, and fast for the rest of the day. TRE has been shown to improve mitochondrial function and inflammation in other diseases, and they hope this intervention will result in improved quality of life in people with POTS. In addition to the TRE intervention, this study will help us understand mitochondrial function in POTS, which may lead to more targeted treatment approaches.