Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! This year, we switched things up. This conference was a bit different from previous Family Conferences or Advocacy Days on Capitol Hill.
A United NFED Family
The National Foundation for Ectodermal Dysplasias (NFED) staff works tirelessly year-round to ensure this event is exceptional. It was a joy to reunite with our NFED family, hearing children’s laughter and seeing parents and individuals forming lasting friendships and support networks. The time at conference is like a “mission infusion”. Staff always leaves full of love, energy and motivation to continue our mission!
Diverse & Dedicated Attendance
We were thrilled to welcome 221 attendees (156 adults, 65 children) from the NFED and six other organizations: the American Academy of Pediatric Dentistry, American Cleft Palate-Craniofacial Association, American Society of Plastic Surgeons, Children’s Craniofacial Association, my Face, Operation Smile, and SmileTrain. Attendees represented 35 states. Isn’t that just awesome? Thank you to these organizations for supporting the Ensuring Lasting Smiles Act (ELSA), which benefits people affected by congenital anomalies.
Advocacy Sessions & Expert Insights
The conference began with a reception and informal chats, followed by a full day of advocacy topics. Highlights included:
- Dental Advocacy: Dr. Beau Meyer discussed advocating for dental treatment options and finding good providers.
- Edelife Clinical Trial Update: Agnes Jaulent from EspeRare shared the exciting news that there are now 10 babies enrolled in the trial and that a second clinical site will open in the U.S. in the coming months.
- Mental Health Tips: Dr. Patricia Marik provided strategies for celebrating small successes.
- Legislative Advocacy Training: Becky Abbott and Kevin Koser, co-chairs of the Family Advocacy Committee, offered guidance on sharing personal stories with legislators.
The day concluded with a memorable walk to the U.S. Capitol’s reflective pool and a celebration of Jack Kriz’s 383-mile bike ride with his daughter, Delany. The duo raised more than $25,000 for the NFED.
Kays’ Kids Camp and Teen Program Fun
While adults were in sessions, the younger attendees enjoyed activities at Kays’ Kids Camp and Teen Program, including games, art projects and story time with Dr. Marik, a child psychologist. They reflected on what makes them special and participated in activities fostering camaraderie and understanding.
This allowed them to see how common their experiences are and led to some great conversations. The teenagers were encouraged to reflect on their encounters and think about what advice they would give to a family new to dealing with ectodermal dysplasias.
Capitol Hill Day
Tuesday brought a few logistical hiccups with late buses, but we made it to Capitol Hill for our 159 legislative meetings. Seeing our sea of teal t-shirts advocating for ELSA was powerful and inspiring! Our fearless advocates shared stories of their challenges with getting treatment and securing insurance coverage for medically necessary care.
The legislative meetings were very positive and we are more motivated than ever to continue our work to get ELSA passed. It takes a lot of grit and courage to walk the many steps to all of these meetings and to share openly personal stories.
We are grateful to the organizations that joined us and we are proud to partner with them. Our community’s grassroots efforts are the reason that we have been successful. We will not stop until ELSA becomes law!
Gratitude
The NFED is incredibly grateful to our sponsors for making this event possible. Standing together, we will shape a brighter future for all families living with congenital anomalies. Thank you to Crane Dental Laboratory, Ozark Prosthodontics, Operation Smile, The Abbott Family, The Fleming/Dennis Family, The Moss Family Foundation, and the Louis J. and June E. Kay Foundation.
We are grateful to Straumann and Pierre Fabre for helping us bring families together.
A huge thanks to the NFED staff for all of their hard work.
Looking Forward
Stay tuned for details on next year’s Family Conference. We look forward to seeing you next July!