[Congressional Record Volume 161, Number 164 (Wednesday, November 4, 2015)]
[House]
[Page H7633]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
TUBEROUS SCLEROSIS COMPLEX
The SPEAKER pro tempore. The Chair recognizes the gentleman from
Pennsylvania (Mr. Fitzpatrick) for 5 minutes.
Mr. FITZPATRICK. Mr. Speaker, tuberous sclerosis complex, or TSC, is
a genetic disease which causes tumors to form in organs throughout the
body, impacting the health and abilities of those born with it.
Nearly 50,000 Americans are affected by this condition, and many more
cases remain undiagnosed because of lack of awareness or observable
symptoms. For these individuals and their families, the fight against
TSC is constant.
But in the face of this adversity, those with TSC show us strength
and determination, not only to survive, but to thrive; individuals like
Evan Moss from Virginia.
Evan was just 2 years old when he was diagnosed with TSC and, by age
4, was suffering up to 400 seizures a month because of his condition.
But like so many with TSC, Evan's story is not defined by this impact.
Now 11 years old, Evan is an accomplished author and a passionate
advocate for those living with TSC.
As a member of the Congressional Rare Disease Caucus and honorary
chair of the Tuberous Sclerosis Alliance, I am focused on shedding
light on conditions like TSC and highlighting exceptional individuals
like Evan.
The fight against TSC extends far beyond this Chamber, but each of us
can play an important role in understanding and, ultimately, defeating
tuberous sclerosis.
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