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Bowling with Barb Fundraiser to strike out mitochondrial disease one last time

Dr. Jerry Vockley (right) is Barb Mendelsohn personal physician and the chief researcher in the United States searching for treatments and cures for mitochondrial disease.

Barb Mendelsohn could be classified as a medical mystery. She was diagnosed with mitochondrial disease, a malfunction at the cellular level that robs her body of energy, more than 15 years ago. Still active and independent, her doctor tells her not to ask why she is beating the odds.

Despite the challenges she encounters in life, for the past 10 years she has organized a fundraiser that benefits the research of Jerry Vockley, M.D., Ph.D., at the Children’s Hospital of Pittsburgh. After raising well over $100,000, the July 16 event at Ward Parkway Lanes will be her 10th and last.

Mitochondrial disease is one of several conditions that are considered a form of Muscular Dystrophy. Mendelsohn, who will celebrate her 60th birthday later this summer, began to experience its symptoms while in her late 20s, but it wasn’t until her mid-40s — after several seizures and stroke-like episodes — that she received a definitive diagnosis. There is no known cure for the disease. Its effects on sufferers vary widely, and thus their prognosis is uncertain. She is still able to drive and lives in her own home. 

Mendelsohn, a member of Congregation Beth Torah, said she feels lucky she got this disease as an adult.

“If you develop mitochondrial disease when you are a child, it can be fatal,” she said. “So, the fact that I had my athletic years is really sweet. It frustrates the heck out of me that I can’t play softball and I can’t golf, but I’m happy I can still get around, so I watch sports on TV.”

She sleeps 10 or 12 hours a day, goes to the Wellness Center at Village Shalom five days a week and walks a mile and a half on the treadmill. She also works out with light weights and takes a nap every day. But daily life can exasperate her. She can’t concentrate well enough anymore to read books or newspaper articles or even balance a checkbook.

“These things are very frustrating, but I’m thrilled I’m able to still live on my own in my own home without any help,” she said. 

Bowling with Barb

Before she started Bowling with Barb (BWB), Mendelsohn participated in and raised funds for a walk that supported research for mitochondrial disease. Along with friends and family, she raised “a lot of money,” but she never really knew where that money was going.

Then one day, when she was bowling with a friend, she “had an epiphany.”

“I called my sister Sharon (Altman) and at the same time, like sisters always do, we both came up with the idea of having a bowling event and have the money go to Dr. Vockley, because he’s the one doing all the research. And that’s how we started Bowling with Barb.”

While bowling is in the event’s name, these days only a few actually bowl.

“I’d say it’s about 90 percent schmoozing,” she said with a laugh, adding that the Ward Parkway Lanes have been great to work with.

Mendelsohn said BWB’s biggest fundraising year was 2015, when Joe Hotrod and the Sparkplugs had its first reunion concert since their BBYO days in the early 1970s. The band will play again at this year’s grand finale, playing a short medley of the old ’50s and ’60s material, and then primarily playing ’70s rock and roll. 

“I appreciate what they’ve done so much,” Mendelsohn said.

Over the years, several different guys performed in Joe Hotrod. This year’s version includes Joe Hotrod’s three original creators: Bruce Wasserstrom, who will travel here for the second time in three years from his home in Madison, Wisconsin, Ron Altman and Ron Fredman. They will be joined by Rabbi Scott White, who is organizing the music again this year, Jim Appelbaum, Bart Cohn, Jerry Fehr, Bob Hurst, Eric Morgenstern and Larry Myer.

Wasserstrom recently plugged the event on Facebook.

“Join us and listen to the music, catch up with old friends, dance, bowl and contribute to a worthwhile cause,” he wrote.

Besides helping Mendelsohn raise money, Rabbi White said the band has “a great time making music together.”

“It’s a lot of fun. And of course, there’s the special quality of it being a reunion because we did this so long ago. It’s never lost its charm for us to be together and do our thing,” Rabbi White said.

Research accomplishment

Dr. Vockley will be at BWB for the third time along with his wife, Cate. He said the fundraiser has been valuable to his research program, helping to develop potential new therapeutics for mitochondrial disorders.

“Flexible funding as provided by Bowling for Barb has allowed me to work on high risk, novel experiments that would have had little chance originally for obtaining funding from other sources. Those experiments have allowed me to identify a number of medications that I am convinced will provide benefit to patients with mitochondrial disease. Equally important, I’ve been able to leverage these preliminary studies into several million dollars of additional funding from the National Institute of Health and interested pharmaceutical companies, representing a significant financial and scientific return for Barb’s donors. I have greatly appreciated their support over the years and look forward to moving some of our early findings into effective clinical treatment for mitochondrial disease,” he said via email.

Mendelsohn also credits treatment by Dr. Jack Katz, an auditory processing doctor she’s been seeing for 10 years, as another reason she is doing so well.

A bittersweet ending

Why is BWB ending now. It’s simple. Mendelsohn is tired.

“It’s going to be very bittersweet because I’ll need to find something else to do.”

Over the years BWB has brought a lot of people together. One year a AEPhi sorority reunion of sisters from the University of Missouri from 1975-1979 was held in conjunction with BWB. Joe Hotrod fans reinvigorated attendance the past couple of years. And it’s not uncommon for friends and family to travel here for the event from such places as St. Louis, Arizona, Denver, San Francisco and New York. 

“That’s really been quite cool,” Mendelsohn said. Many times, her friends have also graciously opened their homes for pre-BWB parties that include schmoozing and Havdalah.

“It’s so nice because it’s almost like a BBYO reunion,” she said. 

When the music stops and the pins stop crashing for the last time, Mendelsohn will miss the people the most.

“Every year more than 150 come and all the sudden it goes back to normal. It’s a big high and makes you feel really special and then it’s a big letdown when it’s over and it’s back to reality again.” 

Many people have helped her over the years, but the one who can’t go unmentioned is her sister, Sharon Altman.

“I would never know what to do without Sharon. She has been my rock.”

Bowling with Barb information

The event takes place Sunday, July 16, at Ward Parkway Lanes from 2 to 4 p.m. A silent auction will be held in addition to bowling and musical entertainment.

A minimum $25 donation is requested of those who want to bowl.

To donate, make checks payable to CHP Foundation and send to Bowling with Barb, c/o 11510 Ballentine, Overland Park, KS 66210. For more information call 816-589-1144.