Her ALS Story Leaders: From Diagnosis to Advocacy
Meet the Guests:
Since her diagnosis with ALS at age 32, Gwen Petersen has poured her energy into advancing the science of her disease. Gwen is not the stereotypical ALS face; thus, she does a lot of media work to dispel the myth that ALS is an older white man’s disease. Prior to her diagnosis, Gwen worked as a Recruiter for one of the top ten medical centers in the country.
Leah Stavenhagen is a globetrotter who began a career in management consulting in Paris at 26. At the same time, she learned that she had ALS. Almost five years after the onset of symptoms, she focuses her energy on advocacy work, having launched Her ALS Story in 2021 to create a network for young females with ALS.
Alexandra Cavaliere spent her 20’s establishing her career as an attorney working in corporate law. When at the age of 28 she was diagnosed with ALS, she began shifting her focus to family, friends, and advocacy. She now devotes her time to and her work with the women of Her ALS Story.
Key Insights:
This episode features three women who are diagnosed with ALS. The conversation is powerful, heartfelt, and inspiring. They share the stories behind their diagnosis, advocacy work, and vision for the future of ALS.
- No One-Size-Fits-All Solution. ALS is a heterogeneous disease, and so is the experience of the symptoms, progression, and effective therapies for patients. These women share their unique stories in their advocacy to emphasize the dynamic approach law makers and healthcare need to take regarding ALS treatment.
- Her ALS Story. These women have a group where they can provide support, openly ask for advice, and motivate themselves and each other. All three women share that their advocacy work and the support group gives them purpose.
- Hope-focused. Sometimes framing around terminal diseases can be depressing, but these leaders want their message to be centered around hope. Hope helps patients find their voice and purpose. And there is reason to be hopeful, including the FDA’s recent approval of a third ALS drug.
This episode is hosted by Sandra Abrevaya. She is a member of the Advisory Council for Her Story and the co-founder and CEO of synaptic care as well as the o-founder of I AM ALS.
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