Congress, here we come!! All of the advocates for rare diseases and ultra-rare diseases on the steps at Rare Disease Week on Capitol Hill 2023

2023 Rare Disease Week on Capitol Hill

The Li-Fraumeni syndrome (LFS)  community was represented in Washington DC February 28 – March 2, 2023, as Living LFS representatives Lon Humpert and Nicole Scoubes attended Rare Disease Week on Capitol Hill. The event, presented annually by the EveryLife Foundation for Rare Diseases, is an opportunity for those with rare diseases and ultra-rare diseases to advocate for better testing, insurance support, treatments, and much more – directly with their members of Congress.

Li-Fraumeni Syndrome Awareness Month kicked off on March 1 in Washington DC with the legislative conference at Rare Disease Week on Capitol Hill. Nicole, Lon, and other rare disease and ultra-rare disease advocates learned about the bills and caucuses they would be lobbying for the next day with their Senators and Representatives, and the entire delegation converged on the steps inside and outside of Congress for group photos.

Rare Disease Week is a great opportunity for meeting with good friends, making new friends, and networking! Nicole and Lon, along with Living LFS founding board member Jennifer Mills, met up with Li-Fraumeni syndrome research fellow Camella Rising and genetic counselor Ashley Thompson, both from the National Institutes of Health. Nicole and Lon also had a photo opportunity with Natalie Clouse and her daughter Gwendolyn, representing The Global Foundation for Peroxisomal Disorders

That evening, the Li-Fraumeni syndrome community kicked off the start of LFS Awareness Month with a celebratory dinner. Afterward, Nicole, Jen, and Lon capped off the day with some nighttime sightseeing in DC.

On March 2, rare disease advocates met with their Senators and Representatives and their staff members. Representing Living LFS and his home state of Kansas, Lon Humpert and other rare disease advocates from Kansas spoke with staff of Senator Jerry Moran and Representative Sharice Davids. Lon also connected with Senator Roger Marshall, MD, and his staff members. 

Nicole Scoubes, representing Living LFS and her home state of Utah, met with 6 Legislative Specialists, along with other rare disease advocates from Utah. Thanks to advocate Matt Pearl from the Fanconi Anemia Research Fund for providing some of these photos! The advocates stopped by the offices of Utah Senators Mitt Romney and Mike Lee, and Utah Representatives Chris Stewart, John Curtis, and Blake Moore.

We are so grateful to Nicole Scoubes and Lon Humpert for advocating for the Li-Fraumeni syndrome community at Rare Disease Week on Capitol Hill #RareDC2023 – Living LFS’ fourth year attending this important event.

In 2021 Treva Vetter attended virtually for #RareDC2021.

In 2020, Lon, Treva, Living LFS President Greg Harper, and Tanya Lamons advocated for LFS at #RareDC2020.

Our first year at Rare Disease Week on Capitol Hill was #RareDC2017, when Living LFS community member Ilonka Dee won the Rare Artist competition with Love Never Dies, her tribute to her son Kaj. President Greg Harper and community member Nina Christina were in DC on behalf of Ilonka and all of the Li-Fraumeni syndrome community.