On this episode:
- Steve Holland has an extraordinary history with the National MPS Society. He was one of the early leaders who helped guide the society from being focused primarily on family support to now its larger issues of advocacy, research, and finding a cure.
- Steve shares some of his family's journey, and early diagnosis before treatments were available.
- The society's humble beginnings in 1974 started with 10-12 MPS and ML parents who started meeting and formally showing support to one another and new diagnoses.
- Barbara Wedehase was the first paid staff member and Director of the National MPS Society in 1999.
- Barbara shares about collaboration development with other rare disease organizations and pharmaceutical companies.
- When Barabara started her work with the society, there were three companies with approved therapies, at the end of her tenure there were 25. The expansion has been stupendous.
- Steve shares what it felt like the first time he realized that treatment would be available for his family and the hope he would bring to the rest of the community.
- We discuss the transition and metamorphosis from an organization primarily focused on family support for an incurable disease to an organization expanding their focus to help fund research, advocate for policy change, with the end goal of finding a cure.
Quotes:
"Back in 1994, at our first MPS conference, there were rumors of a pharmaceutical company that might be interested (in developing treatments), but it was like finding a unicorn. You heard about them, but you never really found them." - Steve Holland
"In many ways, we were able to turn from a kitchen table organization into a corporate table organization; and we were able to do that by relying on the skillset of the new board members and what they can bring to the organization." - Steve Holland
"If you don't have hope, what do you have?" - Barbara Wedenhase
The National MPS Society exists to cure, support, and advocate for MPS and ML.
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