Every year, the Center partners with the Familial Dysautonomia Foundation to host an annual conference for patients, caregivers, and their physicians. The highlight of the annual FD Day event are the Dystinguished awards, which recognize children and adults living with familial dysautonomia – a rare incurable disease. This year was no different.
The Dystinguished award recipients are chosen for their courage, determination, and approaches to challenges. Many of them faced difficult decisions, invested time in overcoming their disability, and proved the importance of not giving up in the face of adversity.
In 2020, the Center recognized 4 adults and 1 teenager with familial dyautonomia. The Dystinguished awardees represented the diverse backgrounds and cultures of the families affected by familial dysautonomia, and included winners from the U.S., Brazil and Israel. Within the group was a celebrated artist, an entrepreneur, a warm funny brother who gives great hugs, a young historian and a speech therapist.
With the pandemic halting the possibility of a face-to-face meeting, the Dysautonomia Center team interviewed each of the winners over Zoom calls to capture their voice, spirit and advice to others. The clips were put together in a short video (below).
Each winner shared their advice for success, which included positive steps to find ways to survive, and keep fighting. All 5 awardees had one thing in common — they never stopped believing in themselves , even through the hard times found ways to keep moving forward and not let an anything stand in their way. Their collective wisdom is inspiring – explained Dr. Lucy Norcliffe-Kaufmann – who came up with the idea of a video. Nothing is more impactful than hearing these brave people talk about their achievements. Usually, we only see patients in the clinic, but the interviews gave the team a chance to see patients in their own homes. A sliver lining of the pandemic was that we could finally make FD Day an international event. The Dystinguished Awardees really bring home why we do what we do and how much these kids and adults deserve cutting edge science to find better treatments.
Even though we didn’t meet in person, I’m happy we still got to see the beautiful faces of the patients and listen to their messages. For me, that’s the most important part of the day — explained Dr. Norcliffe-Kaufmann
The video — created as a collaboration between Dr. Lucy Norcliffe-Kaufmann, Dr. Maria Cotrina, and Ms. Lee-Ann Lugg for the Dysautonomia Foundation was shown at the 35th annual 2020 FD Day.