In 1997, Jon Strum’s wife Jeanne was diagnosed with secondary progressive MS. At the time of her diagnosis, Jeanne was an avid cyclist, waking at 4AM to ride her bike 40 miles every morning. Unfortunately, her symptoms progressed quickly, and within just a few short years, Jeanne had become a quadriplegic, no longer having the use of her arms or legs. Jeanne’s MS continued to progress, compromising her vision and robbing her of her ability to swallow and even speak. Jeanne’s disease also impacted her cognitive abilities, leaving her with no short-term memory. Jeanne has been bed-bound for the past 10 years, receiving all of her nutrition by means of a feeding tube. And although I may visit Jeanne at her sub-acute nursing facility today, she will have completely forgotten my visit by tomorrow.
Having experienced how the destructive force of MS can completely upend a family, Jon looked for ways to become involved and, perhaps, make another family’s journey through the MS jungle slightly less traumatic. Jon took his caregiving experiences and volunteered to write the National MS Society’s first blog specifically for MS caregivers. Through his local National MS Society chapter, Jon facilitated a caregiver support group and offered one-on-one coaching for caregivers.
In 2015, Jon was selected from among hundreds of applicants to be one of three lay members of the Scientific Steering Committee of the International Progressive MS Alliance. The Alliance is a global organization that was founded by a number of major MS organizations around the world. Last year, the Alliance awarded over $15 million dollars in research grants in support of promising work that’s taking place in laboratories in the United States, Canada, Italy, France, Germany, Switzerland, and beyond. You can learn more about the International Progressive MS Alliance here, or We invite you to watch this short video that Jon participated in:
In 2016, I joined the National MS Society’s MS Activist movement. Jon has had the opportunity to visit with USA national legislators in Washington, D.C. to discuss the healthcare issues that are of vital importance to the MS community. Jon has also traveled to Sacramento, California, to meet with state legislators and testify before a legislative committee in support of legislation designed to benefit family caregivers throughout California.
Jon launched RealTalkMS.com to facilitate conversation about aspects of multiple sclerosis including research, interviews and debate. Jon’s goals are to keep multiple sclerosis conversation moving forwards towards real answers and improve quality of life for patients and MS families.
The Multiple Sclerosis Global Support Network (MSGSN) is honored to welcome Mr. Strum to our MS & Me Media Internet Radio platform. Jon’s passion to make a difference in real peoples lives globally displays how caregivers and family members can also engage in moving towards empowerment in the face of chronic conditions.
We are simply delighted to bring Jon’s broadcasts to the world and look forward to working with him.