Golf Event Helps Fund Treatment For Boy, 6, With Rare Disease

BRANFORD, CT —Six-year-old Max Herzog was diagnosed with Duchenne muscular dystrophy, a rare and fatal disease that weakens and limits muscle function over time. The Branford boy is the second person who'll be treated by a nonprofit biotechnology research organization called Cure Rare Disease.

The treatment planned for Herzog in 2022 is a gene therapy treatment for children living with rare disease, Cure Rare Disease noted in a news release. Proceeds from the third annual Golf for a Cure Tournament will help fund that treatment.

A golf, tennis and boating event set for Sept. 10 at Pine Orchard Yacht & Country Club in Branford, the fundraiser hopes to raise money to fund critical research and support rare disease drug development.

Cure Rare Disease notes it is "on a mission to develop precision medicine for rare diseases." The treatment for Herzog, the non-profit says, "has yielded positive results in multiple rounds of tests."

“Max and the entire Herzog family are true superheroes in the fight to find a cure and are leaders among our international network of families,” Cure Rare Disease founder and president Rich Horgan said.

Horgan's brother Terry was born with DMD and will be the first person to receive the treatment in three to six months.

“We’re beyond excited to host our Golf for a Cure event with them as we continue to break barriers in our work to create life-saving, N of 1 treatments – therapies customized for each patient based on their genetic code – for children across the globe,” he was quoted as saying.

Max Herzog's mother Stephanie, who is a member of Cure Rare Disease’s Board of Directors, hopes the community will turn out for the event.

“Golf for a Cure is not just an opportunity to raise money to help treat and cure Max and other children with rare disease. It’s a chance to come together as a community, share fun experiences with Max, and celebrate the success Cure Rare Disease has had to date."

In addition to the golf tournament, there will be tennis events and boat cruises around the Thimble Islands in Long Island Sound. A cocktail reception and dinner will follow the day’s events and feature music, dancing and a live auction.

For information on sponsorship opportunities and for tickets, click here.

About Cure Rare Disease

Cure Rare Disease, based in Boston, is transforming possibilities for people with rare diseases by developing customized therapeutics in time to save lives. Through a collaborative community of forward-thinking families, patients, scientists and supporters, Cure Rare Disease has enabled an ecosystem of innovation and discovery to overcome the obstacles inherent in existing models of medicine and to expedite individualized genetic corrections from clinical research to cure. Learn more at www.cureraredisease.org.