The FH Foundation™ Community

Familial Hypercholesterolemia Advocates

FH Advocates on Capitol Hill

On Monday, June 13, under the leadership of Cat Davis Ahmed, the FH Foundation Director of Outreach, a team of 11 FH Foundation representatives visited 21 Congressional offices on Capitol Hill in Washington DC to educate staff about familial hypercholesterolemia. The FH Foundation shared the big story: FH is a common genetic disorder, affecting approximately 1.3 million Americans.  It is manageable if treated early and yet 90% are undiagnosed. We shared some of our learnings from the CASCADE FH™ Registry and FIND FH® to impress upon Congressional staff the impact FH is having on their constituents.  

Each Congressional office received a FIND FH heat map of their state and congressional district, with the total number of probable FH individuals.   We also shared our personal stories.  FH has taken many of our family members during the prime of their lives.  We live in fear of a similar fate both for ourselves and our children. Today there are more therapies and more hope than ever, but FH is still vastly under diagnosed.  Those of us who have been diagnosed are increasingly struggling to get access to the therapies our doctors are prescribing.
We know that raising awareness saves lives.  Many thanks to the Congressional offices who shared our messages on social media to help raise awareness of FH.  Tweets from our day on the Hill reached 400,000.  This was the FH Foundation's first visit to Capitol Hill and we look forward to building relationships and finding opportunities to work together to prevent heart disease in families impacted by Familial Hypercholesterolemia.

FH Advocates for Awareness 
Training Workshop 2016

The FH Foundation now has 47 trained volunteer FH Advocates in 23 States to share their stories and the work of the FH Foundation to help drive change so people with FH can live longer, healthier lives. Brave and determined individuals who live with familial hypercholesterolemia and their loved ones joined a two day training in Arlington, Virginia last month to become leaders in the fight against the number one killer in the world - heart disease!
Founder and President of the FH Foundation, Katherine Wilemon, spoke passionately to the ethical responsibility and tremendous opportunity we have as a community to improve diagnosis and care of FH.  FH experts James Underberg, MD (NYU Langone), and Sarah Clauss, MD (Children's National Medical Center) gave an in-depth interactive tutorial on the science of FH.  Advocates also participated in public speaking training.

"Meeting fellow FH Advocates let me know I'm not alone in my desire to educate the public about FH awareness and help save lives. "                                           
                                          - Michael Overstreet
FH is vastly under diagnosed and often misunderstood.  The FH Foundation is addressing these challenges with evidence-based, data-driven, and patient-centered programs including the CASCADE FH™ Registry to improve our understanding of FH, FIND FH ® to accelerate the identification of the 90% of undiagnosed patients, the FH Global Summit to bring together experts, policy makers, and the FH Community to address these challenges, and our FH Awareness Campaign to reach millions of people around the world.  FH Advocates are part of a larger effort and represent the FH Foundation in their communities, in the media, to the medical community, and with policy makers.
The FH Foundation gratefully acknowledges the generous support received from our FH family partners and corporate sponsors for the Advocates for Awareness Program: