On Sunday, May 3, the second Annual Walk with Jack Jack took place at the Weber track. Members of the Port Washington community and beyond came together to support 10 year old Jack Conlon, who was born with Alstrom Syndrome, an ultra-rare and complex genetic disorder. The event was dedicated to raising funds for research on finding a cure, reaching upwards of $60,000, surpassing last year’s $55,000 total.
“What started as a Mitzvah project for 13-year-old Eve Benjamin has now turned into a huge community event,” said Jack’s father Mr. Edward Conlon.
Although Eve had already satisfied the requirements of her Mitzvah project last year by helping to start the first edition of the Walk for Jack Jack, she and her family decided to continue their efforts in helping Jack Conlon and others suffering from Alstrom Syndrome. Their dedication allowed for the second Annual Walk with Jack, which, with the funds it raised, will continue to work towards finding a cure.
“So many people came together to show support for Jack, contributing to help find a cure,” said freshman Eve Benjamin. “Without that support, the event wouldn’t have been as as it was. All of the money raised goes directly to helping find a cure for Alstrom Syndrome and to give Jack a wonderful long life.”
Jack is one of about 1,500 people in the world diagnosed with Alstrom Syndrome. The rare and complex disorder will cause Jack’s premature death unless a cure is found. The disease affects multiple systems in the body, causing hearing and vision loss, obesity, diabetes, autism, and eventual failure of the heart, lungs, and liver. Jack already has many of these symptoms, but he remains resilient and determined to fight back.
“There aren’t many things you can control with the disease, but diet and exercise are things you can,” said Mr. Conlon.
As part of his daily battle, Jack has walked three miles every day since he was just three years old, whether it be through the streets of Port Washington or on the treadmill at home. Walking serves as one
of the few ways he can resist the effects of the disease. Beyond his daily three miles, Jack also maintains an organic and high protein diet, does seven therapies, and wears assistive devices—all with minimal
complaints and frequent smiles.
Because the disease affects such few people worldwide, it receives little attention or research funding. Currently, there are few organizations raising funds to find a cure, and there are almost no treatments or drugs near FDA approval. GLP1 drugs should help to prolong Jack’s life, but a cure depends entirely on continued fundraising efforts.
Funds raised from last year’s Walk with Jack were used by Alstrom Syndrome International to fund a study deepening scientific understanding of the disease and its mechanisms and clarifying its complex genotype-phenotype relationships. This work also will help unlock new opportunities for targeted drug discovery and potential genetic therapies for the disease.
“I didn’t know much about Alstrom Syndrome before the walk, but hearing how it affects Jack and how he has persevered is truly inspiring. It was really nice to be able to show support for Jack and his family, and I hope to continue to do so in the future,” said junior Olivia Pennacchia.
Attendees of the second Annual Walk with Jack walked around the track with Jack and the Conlon family in solidarity with his daily three-mile walk. In his kickoff speech at the event, Mr. Conlon gave a special shout-out to Bella Malanga, who raised an additional $7,000 through her own Mitzvah project this year. To earn these donations, she committed to walking three miles a day herself for 30
consecutive days.
“Seeing everyone join together at the Walk with Jack for this cause was heartwarming and goes to show how strong our community really is. Whether or not they know Jack and his family personally, everyone at the walk showed real care and
compassion, ” said junior Zoe Afik.
The event was a true display of unity that brought together the Port Washington community, including friends and family of Jack and the Conlon family, strangers who heard about the event and wanted to show their support, and local businesses. Looking forward, the Conlon family hopes that the members of the community will continue to support Jack by participating in the annual Walk with Jack and raising funds towards research for Alstrom Syndrome so that Jack should never have to walk alone in his fight against the disease