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Continuously Evolving
Manage episode 329568483 series 3320145
Innhold levert av Joe Woolworth and National MPS Society. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Joe Woolworth and National MPS Society eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
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.
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