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Tyler’s Hope and dystonia research

December 26, 2019


What happens in dystonia is that muscles
begin to cocontract. So during that movement they contract together and
then when they contract together, instead of one relaxing and one contracting, it
pushes muscles into different abnormal postures, often twisted postures. From thefirst moment that I met Rick Staab and and and Michelle Staab; that look in
the eyes: “We’re going to do something that’s going to impact the world.” Change
lives for people and make it better for people both living with these
diseases and start to get the scientists dreaming about how to develop the next
generation therapies. It’s an exciting story and in Tyler’s hope is just it’s
the model. The passion of the Staab family to really make this happen
and put this on the radar screen is really transformative. The
interactions there and and what we could do working together as scientists, a
university, and with the foundation and the family; that’s where we need to move. In the case of the Staab family this particular movement disorder traces to
this one small deletion from the DNA, and Rick Staab said, “Well, let’s fix that.” He’s been raising millions of dollars to try to better understand what it does,
what the mutation does, and to begin to think about some emerging treatments and
emerging therapies that we could put toward helping people with this disorder. What we’re trying to do is alter the connections or wiring and we don’t
understand that perfectly. We still need this these basic research efforts to
understand how this disease really manifests itself before we could really
intervene effectively. It’s why we come to work. We come to work because we
firmly believe that we can we can see these families we can identify the
disorders and we can help them, them both with developing better symptomatic treatments and maybe one-day approach of the talk of editing these genes and
improving these kids and adults. The response of
this family has just been amazing and heartwarming and they’ve turned
Gainesville Florida into the capital of dystonia. Rick and Michelle are really
special because you could tell it’s not about them it’s about doing something
for their children and other people’s children, and other people affected by
this disease. They’ve been the lightning rod. They’ve been the people that have
been driving this

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