Warrior Wednesday: Debra
Debra and her family have a long history with the Angelman syndrome community. Debra has been seen as a warrior in her own way raising funds, advocating, and mentoring other families who live with AS in Texas and beyond!
Thank you, Debra, for your commitment to a better future for those living with Angelman syndrome.
Learn more about Debra in this brief Q&A:
Q: I imagine you live a very busy life with two sons, both with special needs, and clearly a demanding career -- how do you do it?
A: I believe that if you want to achieve big things and make a difference in the world; you just do it! If any one of us thought about how hard our lives are with our children, demanding careers, etc you would likely become paralyzed and overwhelmed. My work has allowed me to follow my passion and make a difference in each of the communities I serve. More importantly, working has given me perspective in leading hospitals over the last 25 years and managing between 1,000-7,000 employees along the way. Everyone has challenges and I often say that we don’t have to have a competition as to whose are more challenging!
Q: What does this role mean for you and for Angelman syndrome (if anything) in Texas?
A: My goal has always been for Texas Children’s to play a significant role in the world of Angelman Syndrome in addition to other rare neurological diseases. My father served as physician in chief of Texas Children’s for 30 years and was passionate about clinical care, teaching and research. When my oldest son Jacob was diagnosed in 2001; Dr. Art Beaudet was Chair of Genetics and had spent his career working on Angelman Syndrome. Dr. Beaudet and Dr. Huda Zhogbi have been working in their labs well before my son was born and continue to focus on neurological discoveries that will change the world and get to the bedside.
I like to say that Texas Childrens is in my DNA and because of my childrens DNA, we have experienced every aspect of the health system including the importance of basic science research to bedside.
Q: How has your family contributed to AS over the years? (I heard your father was very well known)
A: The Feigin-Sukin family has been committed to supporting all efforts related to Angelman syndrome over the last 22 years. We recognize and support the mission of both ASF and FAST along with Texas Childrens Jan and Dan Duncan Neurological Research Institute. When a child is diagnosed with a rare genetic syndrome, we need everyone to be an advocate and support each other and support all organizations which are going to make a difference. You learn very quickly that in order to help our kids, there are many angel organizations which need our advocacy, leadership and financial support to make the world a better place and move the needle from therapeutic intervention to CURE.
Our family is eternally grateful for the leadership of FAST to create the momentum, interest, funding and support to bring phase II trials to reality in our lifetime. I am confident kids born with Angelman Syndrome in the next 5 years will have a very different trajectory.