This week we are introducing you to the advocates nominated for RareVoice Awards in the “Federal Advocacy: Patient Advocate,” category. These individuals not only fought for legislation that helps rare disease patients, but also raised awareness about policy that impacts them within the community.
Lana Clay is a 26-year survivor of leukemia and a doctoral student in Applied Life Sciences who also holds Masters degrees in Public Health Professions Education, Community Health Development and Business Science. She has committed the last 10 years of her life to advocacy and serves as an advocate for the Leukemia and Lymphoma Society. As the creator of the non-profit Childhood Leukemia Survivors (CLS), Lana advocates for various rare diseases. Her goals are to help accelerate therapies, limit barriers and create pathways to affordable care for all cancer patients and survivors.
Heather Ferguson is the Founder and Executive Director of the Lymphedema Advocacy Group. Her son Dylan was born in 2006 with primary lymphedema. After a prolonged struggle to get a proper diagnosis for Dylan, she was frustrated to learn that the compression garments and supplies he would need to manage this chronic condition were not covered by insurance. In 2009, Heather began working with her state representative and succeeded in passing the North Carolina Lymphedema Diagnosis and Treatment Act. Heather then turned her efforts to improving coverage nationwide with the introduction of the Lymphedema Treatment Act (HR930/S497).
Paul Fogelberg is a pulmonary fibrosis (PF) patient. His 2004 diagnosis predicted his death within five years. Despite those odds, Paul went to work as a volunteer PF advocate. Supported by his wife and three daughters, Paul took his advocacy work to a new level in 2010 by founding an advocacy non-profit, the Pulmonary Fibrosis Advocates (PFA). While federal funding for PF research was ‘flat’ from 2000-2009, the PFA’s advocacy resulted in an increase in PF research funding of $106.1 million since 2010. In addition, the number of PF research grants has doubled from 68 in 2010 to 136 in 2017.
Diagnosed with Klippel-Feil Syndrome (KFS) eight years ago, Sharon Rose Nissley struggled to find information, knowledge, support, care and treatment options for this painful rare musculoskeletal condition that affects the development of the cervical spine and organs. When Sharon’s career as Director of Interior Design was sidelined, she was motivated to find solutions. She developed a network of patients and families internationally which provides resources and support to improve the lives of those affected by KFS and empowers patients to advocate for their needs. Sharon worked with Genetic Alliance to update KFS information for the NIH National Library of Medicine. She actively built support for the 21st Century Cures Act by using her graphic arts abilities on social media, a powerful platform for patients. Sharon now lobbies Congress to pass the Orphan Product Extensions Now, Accelerating Cures and Treatment (OPEN ACT) to bring forth treatments for those with rare disease.
Join the celebration to recognize advocates like these on November 15th in Washington, DC! Free registration for the RareVoice Awards is available here.