Remembering a myasthenia gravis awareness advocate and MGFA volunteer
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Remembering Tom Larsen, the Incomparable “Rocket Man”

Remembering Tom Larsen, the Incomparable “Rocket Man”

By Kate Stober

Earlier this month the MGFA and the MG Community lost a dedicated volunteer and champion advocate of patients and caregivers. Our friend Tom Larsen passed away on February 1 at the age of 82.


Tom was an enthusiastic and long-time volunteer with the MGFA. He was recognized by the MGFA in 2022 as Volunteer of the Year and, in 2014, we featured and recognized Tom for his exceptional fundraising efforts.


He always participated in the MG Walk in the Washington, D.C. metro area, rallying his friends and family for support and cheering on other participants in their fundraising efforts. His team, “Tom’s Rockets – Blast Off for the Cure!,” was consistently a top fundraising team every year.


“Tom’s enthusiasm for fundraising for the MGFA was contagious. He was so proud of his walk team and of the fact that he was the “rocket man” (he was an actual rocket scientist!),” shared Dova Levin, MGFA’s National Senior Director, Educational and Patient Programming.


Tom spent 22 years in active duty as an Air Force officer, followed by 26 years as a defense consultant in Washinton, D.C. He received his PhD in aerospace engineering from Purdue University. His long and interesting career solving problems for the military certainly set the stage for his next chapter as an “MG problem-solver.”


He was diagnosed with MG in the early 2000s. Like many people in the community, he turned this life-changing diagnosis into an opportunity to help others and support our vision of A World Without MG.


“Tom was incredible with the MG community,” said MGFA staff member Genna Mvalo, who got to know Tom several years ago. “He was always up for an MG Friend call, spreading encouragement to newly diagnosed MGers, and happy to advocate for the community. I will miss teaming up with Tom and his great sense of humor!”


Anita Steele, who has run the Manassas Virginia MG Support Group since 1998, remembered how Tom stepped in to help run the group during the pandemic.


“As the pandemic hit and our group could no longer meet in person, he kept it going with Zoom meetings, when I was unable,” she said. “He assumed the leader position without taking credit for doing so.”


Anita knew Tom for a number of years and shared how deeply she appreciated his friendship and leadership.


“I met Tom when he joined our Northern Virginia (later renamed Manassas) MG support group. He was instantly engaging. He became a constant. He was someone you could count on to be there when you needed him. He became my co-leader. His focus on education and helping others locate resources to help them manage MG was endless. He was always available to take phone calls, and his compassion was evident in all that he said and did. 


When MGFA sponsored MG Walks, he formed a team called "Tom's Rockets - Blast Off for the Cure" (a play on the fact that he was an actual rocket scientist!). He tirelessly fundraised, and he often sat outside any store that would allow him to do so for hours and hours in order to meet and educate people, and raise money for MG.


But above and beyond all he did for MG awareness, he became a friend. He was caring, concerned, dedicated, and selfless. His drive to help others was endless, and he often did so when he was not feeling well himself.  


Our Manassas group, our MG community, and all of us fortunate to call him a friend have lost a champion. Not just of people with MG, but of how to be a kind, good, and decent human being. God rest your soul, Tom. We will miss you.”


Greg Josephs, who has lived with myasthenia gravis for over 21 years, says that the "silver lining" of the diagnosis is meeting people like Tom.


"God gave us good people to do good things. He gave us Tom to do extraordinary things," he said. "Here is a wonderful story about Tom that shows his generosity, caring, and compassion. I was in the middle of a pity party, knowing no one will come, feeling particularly sorry for myself. Guess who called? Tom. He called to see how I was doing. I nearly cried tears of relief. Of course I said, 'I'm fine,' even though before he called I was on the verge of, 'why me?!' I thought of Clarence, the angel from the movie It's a Wonderful Life. That's Tom. I'll miss him."


Hazel Aitken-Cade, who knew Tom through the support group, shared that Tom was a tireless advocate for all who struggled with MG.


“He was an amazing fundraiser and would educate any and all that he encountered. He bonded with so many in his support group whom he helped in various ways with their MG struggle. Blast off, Tom!!!”


Tom’s family plans to continue his legacy of support for the MG Community and the MGFA. We are forever grateful for his friendship and partnership, his support and commitment to fighting MG, and his great sense of humor.

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