Race to help children suffering from little-known disease

Written by on May 14, 2014 in Neighborhood News - No comments
The USATF-sanctioned Ilan-a-thon follows a 5-kilometer course, completely inside Patterson Park. - Photo courtesy of Mousumi Bose

The USATF-sanctioned Ilan-a-thon follows a 5-kilometer course, completely inside Patterson Park. – Photo courtesy of Mousumi Bose

Ilan Stanley Betzer enjoyed music and being held. - Photo courtesy of Mousumi Bose

Ilan Stanley Betzer enjoyed music and being held. – Photo courtesy of Mousumi Bose

Whatever intensity you feel, burning your lungs as you through Patterson Park in that 5-kilometer race, remember the context, and the strength summoned every day by the families of those suffering from peroxisomal disorders.

Sunday, June 8, 2014, is the second annual Ilan-a-thon, a race run in honor of Ilan Stanley Betzer, a baby boy who loved music and being held, and, though he left this world at 14 months of age, brought greatest joy to his parents, Mousumi Bose and Andrew Stanley Betzer.

Ilan suffered from Peroxisomal Biogenesis Disorder, a rare, spectrum disease that affects about one in every 50,000 children. It’s incurable.

On the Ilan-a-thon website, ilanathon.org, Bose and Betzer state that “peroxisomes are a necessary part of the body; defects in peroxisomal activities result in severe developmental delays.”

Ilan, when he was born, was “very weak, unable to suck, swallow, or breathe on his own.”

Last year, Bose told the Guide that her son dealt with his disease with grace.

“I’m just glad I had a chance to be his mom,” she said.

As in last year, every penny from the Ilan-a-thon goes to the Global Foundation for Peroxisomal Disorders, a nonprofit organization that not only funds research efforts around the disease, but supports the families dealing with it, through conferences, medical equipment exchanges and more.

Since last year’s race, Bose has become a member of the GFPD Board of Directors.

“What we try to do as an organization is try to see who has skills in a certain area,” she says, “and try to get them to use those skills to further the cause.”

Recently, the GFPD was able to establish a research grant cycle through fundraising activity.

“We were actually able to give away four grants, ranging from $10,000 to $50,000,” says Bose, adding that one of the grants went to the research of Dr. Steven Steinberg, a geneticist at the Kennedy Krieger Institute.

“Im glad I was involved in it,” she says. “It really allows me to see the effort we’re involved in going back to the community that [the race] is held in.”

Another of the GFPD’s goals has to do with preparing family physicians unfamiliar with peroxisomal disorders.

“One of the biggest issues we have with our families, is that sometimes physicians are not up to date with how to deal with this,” says Bose. “It’s easy to say, ‘Well, there’s really nothing we can do.’”

To fix that, she says, the GFPD hopes to publish an informational document this summer for doctors and families facing a peroxisomal disorder diagnosis.

Other projects are in the works, but in the meantime Bose hopes this year’s race is even more successful than last year’s, which brought about 380 participants and raised about $23,000.

One tradition started last year which continues is the dedication of the race to an honoree. Last year’s honoree, T.J. Sacra, has recently turned 14.

“He’s doing well,” says Bose, “enjoying the sun again.”

This year’s honoree is Livi Menard, who turned 3 in February. Though her parents, Jennifer and Chad Menard, were told that she would not live to see her first birthday, Livi has recently started attending school three mornings a week.

“We are so thankful for everyday we have with our sweet girl,” write Livi’s parents at ilanathon.org.

“Livi’s a pretty amazing little girl, so it makes sense to honor her,” says Bose.

Bose says that planning the race the second time around has been easier than the first.

“It was just a matter of reaching out to the appropriate people to make it happen again,” she says, adding that her work with the GFPD and Ilan-a-thon has been therapeutic.

“I’m glad this is helping people, for sure,” she says. “Doing all this is healing for me. I spent long throughout Ilan’s life feeling absolutely helpless.”

No more.

“Even though Ilan is not here anymore, this is me doing something for Ilan.”

Bose also says that she is extremely grateful to the committee behind the Ilan-a-thon.

“They are some of the most motivated people I’ve ever had the pleasure of working with,” she says. “A great group of people doing awesome work.”

This year’s Ilan-a-thon starts at 9 a.m. on June 8. On-site registration begins at 7:45 a.m. The USATF-sanctioned race starts and finishes near the Pulaski Monument, Eastern and Linwood avenues.

Not a runner but still want to help the cause? An Ilan-a-thon benefit happy hour will be held at Alexander’s Tavern in Fell’s Point on Saturday, May 17, 5-7 p.m. Fifteen percent of all proceeds go to the Ilan-a-thon.

For more information, please visit ilanathon.org.

by Erik Zygmont

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