When Jori Reijonen was told in 2009 by her doctor that she had Charcot-Marie-Tooth disease, he didn’t give her the sugar-coated version.
“When I first got the diagnosis, I really got the worst-case scenario from my doctor,” Reijonen said.
A progressive disease that affects about one in 2,500 people in the U.S., CMT causes muscle weakness and a lack of sensation in the extremities. It also is among 43 different neuromuscular diseases that are researched through funding from the Muscular Dystrophy Association.
Since her original diagnosis Reijonen, 44, has worked with specialists who believe her particular case will progress slowly — much different than the worst case diagnosis that she would eventually be unable to walk or use her hands.
Whatever the diagnosis, Reijonen — who holds a doctorate from Western Michigan University in clinical psychology — decided to turn her focus to learning about the disease and helping others.
“I quickly came to the conclusion that I was meant to use this diagnosis to help other people,” Reijonen said. “Looking at the fact that there was not a support group in this area — and being a psychologist by training — I knew I could run a support group. So my response was, instead of letting myself fall into fear, was to find out as much as I could about the disease and to start a support group.”
Begun in November 2009, Reijonen said the Southwest Michigan CMT Support Group has 28 members who meet once every other month at the Gracespring Bible Church in Richland.
Her work and research, however, has led her to further involvement with the MDA beyond her support group. In 2010, Reijonen became neuromuscular diseases editor at BellaOnline, the second-largest women’s website, and volunteered her time last Labor Day to work the telephones during the MDA Labor Day telethon.
For her efforts, Reijonen was named the 2011 Robert Rose Personal Achievement Award winner for Michigan by the MDA earlier this month.
“The prevalence of CMT in the West Michigan area is really high, and I would say she is a key advocate for raising awareness and supporting our cause,” said Brain Van Kley, executive director of the MDA Western Michigan chapter.
“I just can’t say how fortunate I am to have her represent West Michigan and the Grand Rapids district.”
Named in honor of MDA’s longtime chief executive, the Robert Ross Personal Achievement Award program was started in 1992 to recognize the accomplishments and community service of people who suffer from one of the 43 neuromuscular diseases that the MDA focuses on. The recipient of the 2012 national award winner will be chosen from the 50 state winners and will be announced during the 46th annual MDA Labor Day Telethon tonight.