From August 5-16, LAM patients: Beth Daugherity, Ali DeChristopher, Steph Dreyer, Sarah Poitras, Mary Stojic, Abigail Passeri, Ally Venugopal, Elizabeth Zampino, and Cindy Beasley were busy at work meeting with their legislators and staffers to raise awareness about LAM and to advocate for co-sponsorship of the Supplemental Oxygen Access Reform (SOAR) Act. Fourteen meetings were held (3 in person, 11 virtually) with representatives/staffers from the states of FL, MO, TX, OH, NJ, NY, MD, and WA.

LAM advocates participated in EveryLife Foundation’s educational webinars on approaching their legislators and telling their stories. They worked together to craft their talks and shared their experiences. Because of their efforts, legislators were educated about LAM and issues important to our community directly resulting in an additional co-sponsor of the SOAR Act.

We are grateful for the work of these advocates and the many others who work tirelessly on behalf of their LAM sisters. The LAM Foundation continues to work with the EveryLife Foundation and rare disease advocates from across the globe to raise awareness and show the strength of the rare disease community in effecting meaningful change for our communities. Information on how you can enhance your advocacy knowledge and skills can be found at https://everylifefoundation.org/rare-advocates/advocacy-tools/ If you would like to be involved in future LAM advocacy initiatives, please contact Cindy at cbeasley@thelamfoundation.org.