SAN
DIEGO, Aug. 8, 2024 /PRNewswire/ -- The
Lennox-Gastaut Syndrome (LGS) Foundation is proud to announce that
this month, dedicated advocates from the LGS community will be
meeting with their congressional representatives to discuss vital
issues affecting those living with Lennox-Gastaut Syndrome. This
crucial advocacy work is being undertaken to honor and support the
many individuals and families impacted by this rare and severe form
of epilepsy.
Lennox-Gastaut Syndrome is a complex and challenging condition
that begins in early childhood and is characterized by multiple
types of seizures, developmental delays, and a range of other
neurological and behavioral issues. Despite its profound impact on
those affected, LGS remains underrepresented in public discourse
and policy discussions.
The Advocates for LGS program was launched in 2002 and consists
of 43 LGS family members across the U.S. who are dedicated to
telling their stories to effect change. Each year in August,
advocates meet with their Members of Congress at their in-district
offices and educate them on the issues that are important to the
rare disease community by sharing our stories and making sure our
national leaders understand what it is like to live with daily
seizures and multiple-chronic health challenges.
"The most important thing we bring to these meetings is our own
LGS story," said Jennifer Griffin,
Director of Family Support at the LGS Foundation, Leader of the
Advocates for LGS, and mother to a 22-year-old son who has LGS.
"LGS is devastating and many of our families are not only dealing
with the disease, but also the immense economic, social, and
emotional burden that comes with it. By sharing their stories, the
Advocates for LGS are making a difference that will impact the
future of individuals with LGS and their families."
Learn more about how the Advocates for LGS are advocating to
improve the lives of everyone impacted by LGS at
www.lgsfoundation.org/advocates-for-lgs.
About the LGS Foundation
The Lennox-Gastaut Syndrome
(LGS) Foundation is a nonprofit organization dedicated to improving
the lives of individuals impacted by LGS. It educates the public
about LGS, supports families living with the condition, and drives
cutting-edge research to find the cures.
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SOURCE Lennox-Gastaut Syndrome (LGS) Foundation