Local woman raises money for mitochrondrial research

Most people have never heard of mitochondrial disease, but Barb Mendelsohn knows about it far too well. Mendelsohn, 51, has been battling fatigue and other debilitating effects of the disease for many years. Recently, she has spearheaded fundraisers for mitochondrial research.

Last year, she started the “Bowling with Barb” fundraiser, in which participants make a donation to take part in an afternoon of bowling. This year, she’s added a new twist.

Mendelsohn has established a restricted fund within the Jewish Community Foundation to handle donations from the bowling event and throughout the year and funnel them to support the research work of Dr. Gerard Vockley, chief of medical genetics at Children’s Hospital of Pittsburgh. Dr. Vockley, whom Mendelsohn says “has basically saved my life,” has already done extensive research into mitochondrial disease.

JCF is also helping with the bowling event by posting registration forms on its Web site, www.jcfkc.org. According to Beatrice Fine, JCF’s director of funder services and education, having JCF host the fund makes it easier for people donating to get the 501(c)(3) tax deductions for which they are eligible.

“It’s a great opportunity for us to be able to assist her and her friends in their philanthropic dreams,” Fine said. “We are really impressed with her tenacity and her dedication to bettering other people’s lives. It’s been an honor to work with her and (her sister) Sharon (Altman.)”

Bowl for a goal
Mendelsohn started the bowling fundraiser last year after getting frustrated with her mitochondrial group’s other fundraiser, a five-kilometer walk.

“It didn’t make sense to me, because people with the mitochondrial disease pretty much can’t do (the walk), because they tire out,” Mendelsohn said.

Mendelsohn herself sleeps 12 hours a night and still must take naps during the day. Because of the toll mitochondrial disease has taken on her, she only goes out when a friend or relative can accompany her, such as to the doctor. However, her outer appearance often belies the fatigue within.

“The bottom line is I used to be the biggest athlete in the whole wide world, and then in my mid-20s, I started having things — like I had a seizure, where I went completely mute,” Mendelsohn said.

Another time she had amnesia for a week. It has also affected her memory — she has trouble remembering much about her college years. For years, no one knew what was wrong with her, and all the medical tests came out fine. She wasn’t diagnosed until she was 48, when doctors at the Mayo Clinic did a biopsy of her muscle.

“If kids get it, they either die as they’re born, or the kids can’t walk or talk if they live, so … I counted my blessings that I wasn’t one of those kids,” she said. “Instead of ‘woe is me,’ I’ve been going to Village Shalom and walking with seniors and lifting baby weights, (but) I can’t get my heart rate up anymore.”

She enjoyed bowling for many years and was pleased to raise approximately $12,000 with her first bowling-themed fundraiser last year, which had 71 participants.

“It was amazing; people came that I hadn’t seen in 30 years,” Mendelsohn said.
Her goal this year is to sell out all the lanes in the bowling alley for the fundraiser.

Fundraiser set July 12
“Bowling with Barb” will be from 2 to 4 p.m. Sunday, July 12, at AMF College Lanes, 10201 College Blvd. in Overland Park. Registration forms are available at www.jcfkc.org. To donate, either send a check to the Jewish Community Foundation, marked to go to the Friends of Barb Mendelsohn Fund, or call JCF, (913) 327-8245, about a credit-card donation. The minimum donation for participation in the bowling event is $25 per person.

Trackback(0)

TrackBack URI for this entry

Comments (0)

Write comment