The HEART Act: Living with FCS (Introduction + Podcast)

by Channing Capacchione | WeINSPIRE Reporter

BOSTON, Ma. - For 25 years Lindsey Sutton lived with a rare genetic disease, one so rare she had never dreamed of meeting anyone who was also living with Familial Chylomicronemia Syndrome (FCS). 

For Melissa Goetz, her daughter’s FCS diagnosis at 7 weeks old was a complete shock. FCS is a rare genetic disease which can cause severe pancreatitis and excessive triglycerides. Given it’s rarity, access to people and information wasn’t common and advocacy about and or for FCS was limited. In 2015, at a patient meeting, Sutton and Goetz met. Within a year, they teamed up to begin their own work on treating FCS.

Pictured: Melissa Goetz (left) and Lindsey Sutton (right) in front of the FDA.

With the knowledge that FCS had a 1 in a million chance of being diagnosed, and their intimate knowledge of the disease, Goetz and Sutton founded The FCS Foundation to connect with others who have been diagnosed and learn more about ways to inform the medical community about rare diseases.

In 2016 The FCS Foundation became an established nonprofit, and now includes over 70 individuals in the U.S. who have also been diagnosed with Familial Chylomicronemia Syndrome. 

Sutton and Goetz have been working tirelessly on The HEART Act, which supports a variety of rare diseases, and has been featured in a CNN article this past July.

Pictured: Sutton meeting Goetz’s daughter Giuliana, the first FCS patient Sutton and Goetz had ever met.

Learn more about The HEART Act, Living with FCS, and their inspiring advocacy efforts from Lindsey Sutton and Melissa Goetz, in our second Sprinkle of Inspiration Podcast:

Follow @livingwithfcs on Instagram to keep up with the foundation, or donate here.