PFIC Awareness Day 2024 Recap
Every year we recognize, share, and support the PFIC community in hopes for a better future for those we love!
A message to our community:
We kicked off the 6th Annual PFIC Awareness Day with a special message of inspiration from our Executive Director, Emily Ventura:
“On the bad days, my daughter looks at me and says: “Mom, why do I have so many scars? I don’t want these scars. They are ugly.” I turn to her and I say “Every scar tells a story, and your story happens to be incredible.”
I have told my story as a PFIC parent for many years and for many purposes. My daughter is 13 years old now, and I am proud to hear her begin to tell her own story. I never really knew that it was so different from mine.”
In 2024, we asked our community to share video messages from all over the world! Check out our social media channels to hear PFIC Awareness Day messages from our global community!
“Awareness” is knowledge or perception of a situation or fact. To raise awareness of PFIC, we have to increase other peoples’ understanding of this disease. One of the best ways we can do this is by sharing our experiences through data. One of the best ways we can do this is by sharing our experiences through our data in the PFIC Network Patient Registry!
Fundraising
In 2024, we raised $80,000 to support PFIC research!
Through community peer-to-peer fundraisers and local events, our supporters all over the world came together to support the PFIC Network mission!
Our first charity disc golf tournament in 2023 was so much fun, we decided to do it again in 2024! Nestled in the hills of the Red River Gorge in eastern Kentucky, the scenic disc golf course at Redpoint BBQ was the perfect place to host this fun, family-friendly event. We had disc golf, cornhole, aerial silks performance, live music and more!
We can’t wait to do it again next year!
Thank you to our generous sponsors + amazing volunteers!
The hard work of a wonderful team of volunteers & the generosity of our many event sponsors made our second annual disc golf & cornhole tournament and charity party a huge success. We raised over $20,000 to support PFIC research! We are forever grateful for our local Red River Gorge community and their dedication to supporting our mission.
Sign up for the PFIC Network mailing list to stay in the loop about next year’s event!
Thank you to our peer-to-peer fundraisers!
Peer-to-peer fundraising is when individual supporters organize their own local fundraisers. It is everything from simply asking your friends to contribute to a cause that is important to you to hosting a bake sale or charity walk. In 2024, our peer-to-peer fundraisers raised over $5,000 to support our mission!
- The Gravener Family
- The Crompton Family
- Emily Ventura
- Tyler Bradley
- Bernadetta Skora
- The Perez Family
- Hayley Watts
- Erin Hovey
- Stephanie Ickes
Interested in hosting your own PFIC Awareness Day fundraiser?
