Blowing my own trumpet

Instead of writing another entry, I will let Deborah Kenyon write it for me. Here is an article that she wrote for the November edition of the FD News. If you want to see the pretty photos of me, go to:

http://www.familialdysautonomia.org/news/Tully.htm

Tully Zygier:
An FD Success Story

For Tully Zygier, a 30-year old with FD, having a disability does not stand in the way to reaching her goals. “It’s so easy to give up and just stay at home, but to be able to push yourself and achieve those goals, it does much for your self-esteem,” believes Tully.

In 2009, Tully completed her degree in Social Work at the University of Melbourne, and she has since started working at an organization called Yooralla that provides a wide range of services including education, therapy, advocacy and social work to other disabled people. Her role is to run a peer support program in which she trains mentors and pairs them with other people who have disabilities. This has put Tully in a unique position to help others, since she often knows the everyday difficulties that disabled people face. She says that, “having a disability has made it so much easier for the clients to approach and confide in me. They realize I know what it’s like. I try and be as non-judgmental as possible because I can relate.” Clients at her program include people with cerebral palsy, down syndrome and brain injuries.

Helping others overcome obstacles has not been Tully’s only achievement. Once, while on a holiday in Queensland, a family friend let her drive a golf buggy around. She was inspired by the experience, and decided to obtain her driver’s license in order to expand her mobility. She is now able to drive to work every morning as well as drive her cousins around for occasional outings.

Tully is one of approximately six FD patients in Australia, but she keeps updated on the research and events going on in both the US and Israel. In May of 2010, Tully accomplished the amazing feat of traveling to New York City completely independent of family or friends. She worked at the Dysautonomia Foundation for three weeks in order to gain more insight into the FD community as well as to advance her career goals and nurture her own personal growth.

While In NY, she had the opportunity to attend her first FD Day conference, where she was featured as a panelist in the conference proceedings. During her visit she was able to make many friends and meet other young adults with FD in the New York area. Tully was a positive and inspirational addition to the Foundation’s daily office life, and we miss her presence here!

Always trying to help others, Tully recently extended her generosity to the Foundation. For her 30th birthday, Tully asked her friends to make donations to FD research and treatment in lieu of birthday gifts. We received several gifts from kind friends of Tully, and we are grateful for their support.
At the University of Melbourne’s graduation ceremony in the spring of 2009, Tully had apprehensions about going up on stage to receive her degree because of her walking difficulties. However, she realized that when her name was called, she would have the opportunity for a powerful public statement for people with FD. She made that courageous walk onto the stage with the same bravery that brought her to Midtown Manhattan one year later, and we congratulate her for being a true success.

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2 thoughts on “Blowing my own trumpet

  1. GO TULLY!
    You have come so far from the first day I met you at Yooralla, then you were sooo shy.
    Keep going.
    ps, I never knew there were only 6 people with your disability in Australia.
    Anne

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