Your host, Jason Madison, talks about May 15th - which is international MPS awareness day. In this episode we talk with a mother whose life and expectations of the future were rocked by an unexpected and frightening diagnosis. Then within a span of weeks went from feelings of despair and hopelessness to being shown support, knowledge that she was not alone, and a reason for hope.
Show Notes
On this episode:
- Today's guest, Lisa Todd is the current chair of the National MPS Society.
- Lisa is a CPA, focusing on work with non-profits.
- Lisa heard about the National MPS Society in an email from a friend after receiving her son's diagnosis with the subject line H.O.P.E.
- Her son was diagnosed at 8.5 years old, which is a pretty late diagnosis.
- She recalls the story of diagnosis and the moment she believes was fate or intervention that led to the diagnosis and kept them from a longer diagnostic odyssey.
- Lisa shares the story of attending her first conference and sits down next to a world renowned doctor who was able to offer her insight and hope.
- Lisa was approached at that same conference to consider joining the board, and she saw it as an opportunity to give back. She has now served on the board for more than 10 years.
- We discuss the importance of diversity on the board of the National MPS Society. Diversity in syndrome, skillset, gender, ethnic, and sexual orientation.
- We unpack the changes happening at the National MPS Society to address how many are living longer with their syndromes and how addressing the Society evolves past just emotional support.
The National MPS Society exists to cure, support, and advocate for MPS and ML.
What is National MPS Society: Our Voices?
We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.