Familial Dysautonomia Foundation, Inc.

Registration is now open for the 36th annual FD Day! Click on the link below to join the FD Foundation, in partnership with NYU’s Dysautonomia Center, on Sunday, June 6 starting at 11am EDT. We look forward to seeing you there. www.famdys.org/fdday2021

Chag samech from the FD Foundation

Rabbi Eli Portal, host of the podcast Rolling with the Punches recently interviewed Yehuda Blonder about his experience growing up and living with FD. Check out the podcast via Spotify below starting at timestamp 8:50 to hear how Yehuda lives his life with passion and has learned to take difficult experiences and see them in a positive light. http://ow.ly/FRE750E3FG3

Meet the newest member of Team FD Jake Walker. Jake is taking on the 4x4x48 challenge this weekend where he will run a modified version of 4 miles every 4 hours over 48 hours to achieve 48 miles upon completion for familial dysautonomia. In his own words: when I decided to take on this crazy challenge, I knew I had to run it for the FD Foundation and my wife’s cousin, Josh Kietz. Read more about Jake’s story and help him reach his goal by going to: http://ow.ly/ObvQ50DP8JT Want to learn more about Team FD or interested in hosting your own fundraiser? Contact the Foundation at [email protected].

We couldn’t wrap up Rare Disease Day 2021 without sharing one final fact: did you know it’s easy to get tested to see if you’re a carrier for FD thanks to our friends at JScreen? Check them out at JScreen.org to learn more about testing and to see if you’re an FD carrier.

Rare Disease Day fact 2: familial dysautonomia is classified as a rare disease because there are less than 350 individuals living with this genetic disorder worldwide. That is why we work to enhance awareness on this day, and throughout the year. What are you doing to increase awareness for Rare Disease Day this year?

There’s still time to submit your 2021 FD Journal ad by the NEW deadline, January 31, 2021! Go to www.famdys.org/2021journal to reserve your ad/donate in honor/memory of your loved one(s).

February kicks off Jewish Disability Awareness, Acceptance and Inclusion Month! To commence this month of awareness, join the FD Foundation, JCC Chicago and Sarnoff Center for Jewish Genetics February 3rd for a free virtual screening and talkback about Living Art, a film by David Rochkind featuring Mara Clawson, an artist with FD. To learn more and register go to: http://ow.ly/8Sil50D8LY0

It’s FD Journal time and this year we are commemorating Dr. Felicia Axelrod’s birthday with a special tribute section! Reserve your ad or donate to the 2021 FD Journal in honor/memory of your loved one(s) by going to www.famdys.org/2021journal

As we "wave" goodbye to 2020, the FD Foundation wishes you good health, happiness and hopefully, COVID-free days in the new year. Here's to 2021!

The 2021 FD Journal appeal is here! Reserve your ad before January 15th, 2021 by going to www.famdys.org/2021journal or calling us at 212-279-1066 for more information. Your support helps fund critical care and vital research for those living with FD.

May the light of your menorah brighten your evenings and signal hope for the days to come. We wish you and your family a happy and healthy Chanukah!

Check out our final performance of the FD Foundation’s first-ever virtual concert, UNIFIED Zusha! https://youtu.be/GeQHftUPLdE

You’re in for a treat with Nissim Black now performing at UNIFIED! https://youtu.be/GeQHftUPLdE

We are pleased to have the The Portnoy Brothers join UNIFIED today! https://youtu.be/GeQHftUPLdE

UNIFIED’s special guest artist, @BaruchLevine is currently sharing a beautiful song with the community. Hear it by going to https://youtu.be/GeQHftUPLdE

Check out Pey Dalid Music live from the FD Foundation’s UNIFIED concert! https://youtu.be/GeQHftUPLdE