Some people with dysautonomia work with service dogs to assist them with specific tasks. This guest blog post will discuss service dog laws and requirements in the US. Other countries may have different laws that apply to service animals. As someone with multiple chronic illnesses and service dogs, here are some tips that may help you decide if a Service Dog is right for you. Firstly, it’s essential to do your research. Before you get a Service Dog, there are plenty of facts to consider. The first step in considering a service dog in the United States is to discuss with your doctor whether yo ..read more

Hot of the presses! We are excited to announce that two journal articles summarizing the findings of the first National Institutes of Health (NIH) Postural Orthostatic Tachycardia Syndrome (POTS) Research Workshop, written by 30 of the top POTS experts including Dysautonomia International representatives, are now available. Part 1 summarizes the current state of scientific knowledge and POTS clinical care. Part 2 summarizes the top priorities for POTS clinical care and research, and calls for the NIH to fund an additional $50 million in POTS research over the next five years. (links below) Pe ..read more

We’re putting the volunteer spotlight on Kim DiBona this month. Kim’s started volunteering for Dysautonomia International after her daughter’s diagnosis. “The two and a half year diagnostic delay in getting diagnosed, the hundreds of tests and appointments, the 25 doctors who couldn’t figure out what was wrong… I couldn’t sit back and let other families go through that.” Kim has volunteered her time on our Patient & Caregiver Advisory Board since the launch of Dysautonomia International in 2012. “There was only one Facebook support group back then. I hosted a few support gr ..read more

We’re shining our volunteer spotlight on Kevin Gagen this month. Kevin has volunteered with Dysautonomia International since 2016. He was inspired to start volunteering during his daughter Caitlin’s junior year in college. “She was playing soccer at SUNY Plattsburg, her team wanted to bring awareness to POTS by having a fundraiser and game dedicated to POTS awareness. We came up with the phrase Kick it to POTS. Even though Caitlin graduated two years ago, the team still continues to have a Kick it to POTS game every year.” The Gagen family created a logo using their daughter as ..read more

by Lauren Stiles, Dysautonomia International President & Co-Founder It is with a heavy heart that I share this sad news. Dr. David C. Kem, a leader in POTS research, passed away from COVID-19 complications on the morning of Sunday, November 22, 2020. Dr. Kem was a good friend to everyone here at Dysautonomia International. We send our sympathies and prayers to his wonderful wife Janet and their many children and grandchildren. Dr. Kem was a gifted researcher and clinician, who continued to innovate with his research until the very end of his life. Ju ..read more

We’re shining our volunteer spotlight on Dr. Blair Grubb this month. Dr. Grubb is an internationally recognized expert on syncope and autonomic nervous system disorders, who volunteers his time and expertise as a member of Dysautonomia International Medical Advisory Board. Amongst many other titles, Dr. Grubb is a University Professor of Medicine and Pediatrics at the University of Toledo, where he runs a very busy syncope clinic. Patients come from all over the world to see him. Fun fact about Dr. Grubb: he was among the first researchers in the United States to employ head upright tilt ..read more

https://dysautonomiainternational.org/blog/wordpress/wp-content/uploads/2020/08/Volunteer-Spotlight-2.mp4 This month we would like to shine the spotlight on Kate Bourne, an active Dysautonomia International volunteer. Kate started volunteering for Dysautonomia International shortly after she became a graduate student at the University of Calgary, working under the supervision of Dr. Satish Raj, a Dysautonomia International Medical Advisory Board member and collaborator on the “Big POTS Study.” Kate put her data analysis skills to work, mining the Big POTS Survey data for new information ..read more

  This month Dysautonomia International would like to put the Volunteer Spotlight on Amy Kohut who has been volunteering for Dysautonomia International since our launch in 2012, and recently joined our Board of Directors. Amy fell ill during her first year of law school and ended up receiving a diagnosis of POTS from Dr. Thomas Ahern of Scripps Health in San Diego in 2008. Amy says, “He saved my life. I had an “old school” Tilt Table Test and let’s just say it wasn’t pretty.” Amy started the California POTSies Facebook group in 2009 to see if anyone else had this syndrome, and sure ..read more

This month Dysautonomia International’s Volunteer Spotlight is shining on Lorin Bales, leader of our Alabama Support Group. Lorin and her husband live in Huntsville, Alabama or as the locals call it, Rocket City, for their NASA and missile defense industry. Like most people from Huntsville, Lorin considers herself a nerd, programmer, and lover of all things science. She has loved astronomy and telescopes since high school, which fueled her passion to major in physics, and eventually led to a career as a rocket scientist. Lorin and her husband have two big, loveable, goofy newfoundla ..read more

New members of Dysautonomia International’s Board of Directors (L to R): Natasha Graves, MPH, MBA, CHES, Amy Kohut, JD and Shannon Koplitz. Dysautonomia International is pleased to announce the election of three new members to our Board of Directors. The newly elected board members are Natasha Graves, MPH, MBA, CHES, Amy Kohut, JD, and Shannon Koplitz. We are thrilled to welcome these talented individuals. Their long time volunteerism and commitment to Dysautonomia International’s mission, providing awareness for all forms of dysautonomia, and assisting the patient and parent community, is com ..read more