FUMS 109 - Real Talk About MS with Jon Strum

FUMS: Giving Multiple Sclerosis The Finger

Jon Strum's wife, Jeanne, was an avid biker, hiker, and writer when she was diagnosed with Progressive MS. Almost immediately, she became so severely disabled that Jon stopped working and became Jeanne's carer and advocate. He continued in this role until Jeanne passed in February 2020.

Part of Jon's advocacy was (and continues to be) hosting the popular RealTalk MS podcast. As you'll hear, Jon started the podcast while sitting on a scientific committee as a member of the International Progressive MS Alliance, to bridge the gap between patients and caregivers and the scientific community. Since its launch in 2017 and over 200 episodes later it has been downloaded more than 1,000,000 times by listeners in over 100 countries around the world.

Jon's devotion to his wife is moving and unquestionable. But so is his desire and commitment to advocating for all people living with Multiple Sclerosis.

Listen in to my interview with this wonderful man and find out about all the ways that you can advocate for people with MS and affect change!

Topics covered in this episode include:

• The story of Jeanne's diagnosis, and Jon's journey into caregiving and advocacy
• Jon and Jeanne's experiences with health insurance, the impact on their finances, and the heartbreaking decision Jon had to make for Jeanne's care
• Why Jon feels that people with more progressive forms of MS can feel forgotten by the scientific community, and why he started the RealTalk MS Podcast
• Jon's partnership with the National MS Society
• Things that are on the legislative horizon for people in the US with MS, and how you can get involved and put pressure on your representatives!

Full show notes and resources at https://fumsnow.com/fums109/