The EveryLife Foundation for Rare Diseases welcomed Abbey Hauser to its board of directors during its winter board meeting. Hauser, a 27-year-old rare disease advocate living with Classical Ehlers-Danlos Syndrome, has helped to encourage young adults to make their voices heard and define new pathways for young adults to engage in advocacy.
“The EveryLife Foundation is committed to continuing to diversify its board of directors,” said Julia Jenkins, EveryLife Foundation for Rare Diseases Executive Director. “We are working to ensure our Board of Directors represents the entire eco-system of rare disease stakeholders, especially patient and parent advocates. Abbey’s perspective as a young adult living with a rare disease will help us expand our reach and better serve our community. We are proud to have her join the board and bring her unique insight and experiences. I hope that Abbey’s service will encourage other organizations to include this critical voice on their boards as well as inspire young adults to seek board positions.”
Hauser has advocated for policies impacting the rare disease community on both the state and federal level. In her home state of Minnesota, she worked alongside a group of advocates to pass a bill establishing the state’s first Rare Disease Advisory Council. Hauser has participated in numerous federal advocacy events, including Rare Disease Week on Capitol Hill and Rare Across America (both hosted by the Foundation’s Rare Disease Legislative Advocates program). She is a graduate of the inaugural class of the Foundation’s YARR (Young Adult Representatives of RDLA) Leadership Academy and a member of the Foundation’s YARR Speakers Bureau.
“As a young adult living with rare disease, I am excited to lend my voice to the EveryLife’s Board of Directors, especially on issues impacting the young adult population,” said Hauser. “I’ve always felt that the EveryLife highly respects the young adult voice. I’m looking forward to collaborating with its incredible board members to ensure the young adult voice is included in decisions and discussions.”
Hauser has spoken at numerous rare disease events and served as co-emcee of the 2021 RareVoice Awards program. She is also a certified personal trainer and enjoys sharing her passion for adaptive sports with rare disease patients. Hauser is the author of Owning My Story, a blog that chronicles her experiences with rare disease, disability, and chronic illness.
“Rare disease hasn’t stopped Abbey from thriving. She ran and completed the Chicago marathon. For the past decade, she’s been a volunteer counselor at the Muscular Dystrophy Association’s summer camp. In college, she worked to make fitness and sports fully inclusive for people with disabilities and chronic illnesses,” said U.S. Senator Amy Klobuchar (D-MN), “In her new role with the EveryLife Foundation Board of Directors, Abbey will continue serving as an advocate, pursuing her vision of a world in which every rare disease has a viable and effective treatment. A world where research gives everyone a chance to fight no matter how rare their disease.”
Hauser brings the total number of board members at the Foundation to 11, including the following: Mark Dant, Board Chair and Ryan Foundation Executive Director; Frank Sasinowski, MS, MPH, JD, Board Vice Chair and Hyman, Phelps & McNamara P.C. Director; Jennifer Bernstein, Board Secretary and Horizon Government Affairs Executive Vice President; Vicki Seyfert-Margolis, PhD, Board Treasurer and MyOwnMed Founder and CEO; Emil Kakkis, MD, PhD, EveryLife Foundation Founder and Ultragenyx President and CEO; Ritu Baral, Cowen and Company Managing Director/Senior Biotechnology Analyst; Richard S. Finkel, MD, Director of Experimental Neurotherapeutics in Translational Neuroscience Program, St. Jude Children’s Research Hospital; Stephen C. Groft, PharmD, Special Volunteer to the National Center for Advancing Translational Sciences at NIH; Julia Jenkins, EveryLife Foundation Executive Director; Amrit Ray, MD, MBA, Bain Capital Life Sciences Senior Advisor; and Abbey Hauser, young adult advocate.
