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What do you do when your name no longer represents your organization? How do you create urgency among lawmakers and the public so that those you serve have a chance to live fulfilling lives?
In this episode of Associations Thrive, host Joanna Pineda interviews Joe Lindahl, CEO of Mission MSA. Joe discusses:
- How Multiple System Atrophy is a rare neuro-generative disease that is a movement disorder like Parkinson’s, but it is much worse because of the speed at which the disease progresses.
- The organization’s rebrand from Multiple System Atrophy Coalition to Mission MSA to lend clarity and urgency to their mission to cure MSA.
- Mission MSA is the largest funder of research into MSA, after the NIH.
- His journey working for different organizations, including working for an association management company, and many medical associations.
- The transition from working for a professional society to working for a nonprofit.
- How having patients, care partners, and industry researchers on his Board gives the organization insights and perspectives from the entire MSA ecosystem.
- How Mission MSA provides seed grant funding to support new ideas, and collaborative ideas to help companies attract larger pots of funding.
- How Mission MSA is supported mostly through fundraising.
- Their support services to patients, especially newly-diagnosed patients, including a patient support line that is staffed by trained volunteers and staff, and peer supporters who meet with patients in person.
- MSA Connect, their new, private community platform for patients and care partners.
- The new MSA Centers of Excellence that provide interdisciplinary care from trained healthcare professionals who know about MSA and how to care for MSA patients.
- Mission MSA’s advocacy efforts, including support for the National Plan to End Parkinson’s Act, which will bring together internal and external stakeholders to find a cure for Parkinson’s Disease and other movement disorders.
- When a person gets diagnosed with a debilitating disease, they become eligible for disability payments and Medicare after two years, but that waiting period is too long for MSA patients, because of the speed of disease progression. Mission MSA is advocating for patients to get these disability payments and access to Medicare much sooner.
- March is Multiple System Atrophy Awareness Month. Please spread the word about MSA!
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