Are you prepared for 2023? Make 2023 a health-focused year for you and your family. An FD annual visit at the NYU Dysautonomia Center is the most important step in getting an overview of your health and anticipating problems that may arise due to familial dysautonomia. Keep track of your pulmonologist, gastroenterologist, and ophthalmologist appointments to ensure your lung, GI, and eye health are optimized! Caregivers and family members should be able to perform the Heimlich maneuver and CPR with confidence. Sign up for a local CPR training if you haven’t had one in the last two years. You c ..read more

Caring for a loved one with a rare condition can feel very isolating. You may feel overwhelmed, exhausted, or lost. You may have questions about tackling burnout, caregiver fatigue, or resources. Or maybe you just want to know how others do it.  Let’s talk. The NYU Dysautonomia Center is excited to launch a virtual mutual aid support group for FD parents and caregivers to meet and discuss these and other issues in January 2023. The monthly or bi-weekly Zoom sessions will be hosted by NYU Dysautonomia Center and FD Foundation social work intern/MSW candidate Matthew Hertzberg. During meet ..read more

Celebrating special birthdays and FD Day 2022 Honorees and Artists This last Sunday, FD Day 2022 was live-streamed to our international audience involved in the FD community, including patients, parents, and the involved and interested medical and scientific community from around the world. Our director in chief, Dr. Horacio Kaufmann, and other Dysautonomia Center team members talked about pioneering new developments at the Center including modern autonomic testing tools, an upcoming clinical trial for a medication to treat autonomic crises at home, and the exciting progress made in genetic th ..read more

A newly discovered XE COVID-19 variant is considered to be highly transmissible and contains a combination of genetic material from the BA.1 and BA.2 variants of omicron. (NIAID/NIH via AP, File) While COVID-19 cases continue to decline, we again find ourselves with news circulating on COVID-19 vaccine boosters and a spreading omicron sub-variant (BA.2 and XE). We know many of you have questions, and we hope this blog provides some answers and clarifies who is eligible for a fourth dose (second booster). Recently, the FDA approved, and CDC updated its recommendations around the use of a secon ..read more

Many people with FD are unsure whether the aspiration pneumonia caused the crisis or whether the crisis’s retching and secretions caused the aspiration pneumonia. Here are three useful tips to AVOID aspiration pneumonia and other common crisis complications: Sit upright during crisis. Do not lie down while retching Use G-tube, if possible, for all meds & liquids until crisis subsides. Add 1/2 tsp of salt per liter of water to avoid hyponatremia Hypertensive vomiting attacks are sometimes associated with excessive vasopressin secretion, anti-diuresis, water retention, and hyponatremia. Hy ..read more

4th COVID-19 vaccine, boosters, and who is eligible The CDC has shortened the interval, from 6 months to 5 months for people who received the Pfizer Vaccine, which means that people can now receive their booster shot 5 months after completing their Pfizer primary series (COVID-19 shots 1 and 2). ​​​​ The interval of the J&J vaccine (2 months) or the Moderna vaccine (6 months) has not changed. The CDC has also expanded its recommendations to adolescents ages 16 and 17 to get boosted at least six months post their initial Pfizer vaccination series. This recommendati ..read more

Coughs can be caused by a variety of factors, including GERD, asthma, upper respiratory infections, and allergies. Some patients also have habitual coughs known as cough tics, which can last for years without being triggered. Coughing may occur several times per day, but once asleep, the cough almost always ceases. Medications do not help with a habitual cough because there is no physical cause for it. However, because many doctors are slow to recognize habit cough, children are frequently treated with asthma, allergy, acid reflux, and/or tic disorders with no improvement before a diagnosis i ..read more

It’s that time again! Introducing this years annual FD Day 2022 art competition “The World Through My Eyes, The Mitzvah Year”. Since 2009, the Dysautonomia Center has hosted an annual art competition called “The World Through My Eyes” to set the challenge for people with familial dysautonomia to tell the story of how it feels to live with this rare genetic disease. This year, we are celebrating a very special anniversary of “The World Through My Eyes” annual FD art competition. It has been 13 years since it’s inception, making this the competition’s Bar and Bat Mitzvah! For that reason, this y ..read more

Do I qualify? The U.S. Food and Drug Administration has authorized a third dose of COVID-19 vaccines by Pfizer and Moderna Inc for people with a moderate to severely compromised immune systems. This category includes people with: – Chronic renal disease (GFR less than 60mL/min) – Solid tumor and hematologic malignancies – Recipients of solid organ or hematopoietic stem cell transplant – Severe primary immunodeficiencies (https://www.niaid.nih.gov/diseases-conditions/types-pidds) Types of Primary Immune Deficiency Diseases | NIH: National Institute of Allergy and Infectious Diseaseshttp://w ..read more

Our annual publication on research and clinical care in familial dysautonomia from the Dysautonomia Center is now available here to read electronically. It will also be sent via email, and hard copies will be sent soon as well. This year, the publication includes additional written literature from our extended medical and research teams and leading research scientists with whom we are collaborating. Topics range from expanding awareness of other genetic mutations that can cause FD, how other genetic autonomic and sensory neuropathies have signs and symptoms similar to those of FD, studies that ..read more