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Health News Florida

Musical Benefit for Afflicted Youngster

The Junction@Monroe's main stage
The Junction@Monroe's main stage

A Tallahassee singer has recruited some of the area’s top players to help save a little boy’s life. The musical marathon takes place Sunday, July 8th at the Junction@Monroe.

The Junction@Monroe's main stage
Credit junctionatmonroe.com
The Junction@Monroe's main stage

The singer’s name is Mary Ann Hoffman. The rare hereditary disease in question is called “ALD”, short for “Adrenoleukodystrophy.”

“My son has it. He was born and we found out immediately because my uncle passed away at 9 with this disease,” she shared.

ALD affects about one in 18,000 people. It attacks the myelin sheath that protects the neurons of the brain. Hoffman says there is a treatment. It’s called “Lorenzo’s Oil” named in honor of another little boy, Lorenzo Odone, whose family first concocted the substance.

“They were just common people and they figured out an oil to combat the acids that build up in the body and eat away at the myelin sheath,” Hoffman said, adding the treatment has been a godsend for her son who is now 16.

But her sister’s child, Mason Jr., is also afflicted with ALD and desperately needs Lorenzo’s Oil.

“It was on clinical trial until last June. Last June they closed the trial due to lack of funding. Now it’s $800 every 3 months for the oil, which my ex-husband can afford because he has like three degrees. My sister, however, stays at home. Mason’s already having complications. He husband is a landscaper. They can’t afford $800 every three months!”

On top of the medicine expense, Hoffman said the family’s car is essentially shot. So she was determined to help.

“So I said, ‘I’m going to try something.’ And then I tagged 165 musicians that I knew on Facebook and that’s when it blew up!”

Suddenly, Hoffman found herself with an all-star lineup of performers willing to support her cause.

“Dylan Allen, Connor Bacon, although I can’t remember the name of his band, but I heard them at the Salty Dog and I liked them. Kristen McCayliff, Del Suggs, Colleen Nixon, Boo Radley, McCaul Chapin, Maurice Magnum, Blues Factor, Old Soul Revival with Avis and the Frank Jones Band.”

That’s Avis Berry, by the way. Hoffman says there will also be a silent auction.

“Big things for the auction, like a 5-bedroom, 5-bath house on the Bay for a week. And a condo for a week at St. George’s Inlet. Kevin gave a ukulele with a gig bag and a $100 gift certificate, Tallahassee Diamond Center gave me $200 in fresh water pearls, I’ve got framed art and plenty of gift certificates….”

Hoffman said there will be plenty of fun things to attract a big crowd, and she’s hoping it will be large, because of how much little Mason, Jr’s medicine costs.

“We just have to see because it’s about $3200 a year for the oil.”

And if there's any cash left over from the benefit, Hoffman hopes that might help buy a more reliable used car for the family,  The benefit takes place Sunday, July 8 from 4 p.m. - 10 p.m. at the Junction@Monroe.

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