#FDMatch2021 supporting Familial Dysautonomia Foundation

About the Cause

Familial Dysautonomia (FD) is a rare genetic disorder that affects the autonomic and sensory nervous systems. Symptoms include: insensitivity to pain, absence of tears, unstable blood pressure and body temperature, respiratory, digestive and vision problems. Though FD affects people across the world it occurs almost exclusively in people with Ashkenazi Jewish heritage. FD is inherited in an autosomal recessive manner when both, otherwise healthy parents, pass on their copy of a mutated IKAP gene to their unborn child. For more information about FD and the FD Foundation, visit www.famdys.org.


For the 5th year in a row, the FD Foundation is proud to host #FDMatch2021, our annual crowdfunding campaign. This year's event celebrates and commemorates 70 years of trailblazing history, medical research and tremendous strides towards enhancing and extending the lives or people affected by this devastating and extremely rare genetic disorder.

Investments by our past supporters have enabled the Foundation to accomplish a great deal:

  • In 1970, the Foundation joined forces with NYU Medical Center to create a dedicated treatment center for FD.   The Dysautonomia Treatment Center has become a world-class resource, offering state-of-the-art medical care and conducting cutting-edge clinical research. 
  • The Foundation was one of the first rare disease groups to establish a Natural History Study, which continues even today as a critical resource for research initiatives.
  • Research funded by the Foundation led to identification of the FD gene in 2001.  Genetic testing, now available to all, means thousands of healthy babies born every year to carrier families.

Not resting on its laurels, the Foundation continues today to build on its strong base, offering enhanced programs and services for people living with familial dysautonomia:

  • The Dysautonomia Center at NYU Langone is staffed with a full complement of dedicated and caring physicians, nurse practitioners, researchers and others, specially trained to provide the best medical care for people living with FD.
  • The Center recently added Dr. Alejandra Gonzalez-Duarte, MD, a highly accomplished physician and researcher, to its team.
  • In response to the COVID-19 pandemic, the Center began offering telemedicine appointments, ensuring continuity of care for people with FD worldwide who are unable to visit in person. 
  • We are fortunate that several “super stars” in the field are spearheading FD research initiatives, including Dr. Adrian Krainer, Dr. Susan Slaugenhaupt and Dr. Frances Lefcort.
  • The Foundation’s Scientific Advisory Board is extremely encouraged by several research initiatives currently in the pipeline and optimistic that at least one will be ready for clinical testing in the coming year.
  • In the meantime, improved care protocols have led to dramatic improvements in life expectancy for people with FD:   people born with FD who had a 50% chance of living to age five, now have an 80% chance of surviving well into adulthood.

With your support of #FDMatch2021, the Foundation can continue to ensure the best and brightest possible future for people living with FD.  Your gift to the Foundation’s Fall Crowdfunding Campaign helps fund:

  • Excellent medical care at the Dysautonomia Treatment Center at NYU Langone, both in person and virtually. 
  • FD Research that will help ensure longer and better lives for people with FD; as well as help unlock mysteries of other neurological disorders such as Parkinson’s, ALS and Multiple Sclerosis.
  • Supportive services for people with FD and their families, such as the Foundation’s oxygen machine loan program, weekly virtual hang-out groups and our newest patient-focused initiative, Voices of FD. 

Join us to commemorate the 70th Anniversary of the FD Foundation.

Honor someone you know who has FD or who is fundraising for FD by supporting this year’s crowdfunding campaign, #FDMatch2021.

Become a Fundraiser by clicking on one of the buttons to our left or below and help us exceed our goal of raising $250,000

Your support will make a difference!

Remember, your gift will be matched, dollar-for-dollar, up to $100,000.