Gillian Segall Inspires PWS Community With Message of Hope [2019 CONFERENCE VIDEO]

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New Orleans. Click below to watch the video, and scroll down for a full transcript.

 

Transcript of Speech by Gillian Segall

Thank you Susan and the Foundation for Prader-Willi Research for inviting me to be a part of the conference. And thank you all for being here. I know this room is filled with parents and researchers and you’re all here for one reason – to create a brighter future for everyone who is living with Prader-Willi syndrome. 

Five years ago, when my family first got involved with this foundation, there were just a few drugs in the very early stages of clinical trials. But now, just five years later, there are several promising drugs in advanced stages. Just four days ago, I flew to New York with my family to start one of these clinical trials – funded by the Foundation for Prader-Willi Research. That’s something we’ve all dreamed about for years. 

I know that in many ways I’ve been very lucky and very blessed. I have a loving support network – with amazing parents, a brother, grandparents, aunts, uncles, cousins and friends – that have been there for me every step of the way. I’ve had dedicated, trail-blazing professionals – like Dr. Jennifer Miller and Elizabeth Roof – who have given life-changing medical care to keep me happy and healthy. 

I’ve had the best support team in school and in my new transition program. And I’ve had incredible opportunities to be a part of fun activities and travel to amazing places. But what I’ve never had is independence – independence to do simple things on my own that most people take for granted – like going to birthday parties, going to classes and swim meets, or going out to a movie and the mall like other kids my age. 

But because of this organization and all of you – there is finally real hope. It will take months to determine how I will respond to my clinical trial. And it could still be years before a new drug is approved and available for all of us who need it. We still have a long way to go. But I’m finally at a place where the possibilities of college, a job and an independent future are not just a distant dream for me and all of your children. They are within reach! 

Thank you to FPWR for your vision. Thank you to the all the researchers here. The work you are doing is changing lives more than you can ever imagine. 

And thank you to the parents and families here for two reasons. First – for raising money for this groundbreaking research. And second – for continuing to push for a better future for all of us kids. That future is so bright. And I’m so excited about what it holds for all of us with Prader-Willi syndrome.

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Topics: Research

Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.

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