3rd Annual Virtual Fun Run

3rd Annual Virtual Fun Run

Sign up for the 3rd Annual Virtual Fun Run to raise awareness for those living with FCS. To celebrate the progress of the HEART Act (hyperlink), the virtual race will take place on The Mall in Washington, DC! Registration Link Here Date of Virtual Run: September...
New FCS clinical trial: The Palisade Study

New FCS clinical trial: The Palisade Study

ARO-APOC3 is an investigational therapeutic being evaluated by Arrowhead Pharmaceuticals, Inc. forthe treatment of FCS. A Phase 3 clinical trial, the AROAPOC3-3001 Palisade Study is currently recruitingadults with a clinical diagnosis of FCS at multiple research...
CNN features FCS Foundation and the HEART act

CNN features FCS Foundation and the HEART act

CNN interviewed FCS Foundation’s co-presidents Melissa and Lindsey about the #TheHeartAct2020. It was an honor to share our journey with them. The FCS community is so proud to support this legislation and work alongside so many #raredisease groups, including the...
A Mother’s Story

A Mother’s Story

To My Younger Self After My Daughter’s Rare Disease Diagnosis Dear Melissa, Well, this isn’t what you were expecting. Your mind is racing, you feel numb and you’re in shock. It’s OK. It’s all OK. Because here’s the thing: You’re going to feel a lot of things over the...
Justin’s Story

Justin’s Story

Throughout my childhood, I was a very active kid. I spent many days working on my grandfather’s dairy farm and enjoyed skiing and playing football, soccer and basketball. While to others I seemed like a normal relatively healthy boy, looking back I now can see that I...
Lindsey’s Story

Lindsey’s Story

Dear FCS, “We sure have been through a lot together, and after 25 years, I am still trying to figure you out. You make my life so hard almost every single day. I cannot go an hour without stressing that, because of you, I am going to get pancreatitis. I worry every...