Jack is 9 years old and lives in Port Washington with his amazing family the Conlon’s. He was born with a devastating rare disease called Alstrom Syndrome, a rare complex genetic disorder which will cause Jack’s premature death unless we find a cure. Jack will go blind; deaf; suffer from heart, kidney, liver and lung failure; and he will suffer from diabetes and obesity, as well as autism.

There are less than ~1,500 identified diagnoses in the world!! Because of the fact that this disease is so rare, there are not many sources raising funds, pharma companies doing research and thus not many promising drugs anywhere near FDA approval.

9 year old Jack has already started to lose his vision and hearing and is battling obesity, diabetes and liver disease. As part of his daily battle with this disease - Jack walks 3 miles a day rain or shine (and has been doing so since he was 3 years old)!!

On Sunday May 4th from 10 am - 12pm we will walk with Jack and the Conlon family at the Weber Track - we hope to raise funds to support research and find a cure for Alstrom Syndrome, and to show them how much this community supports them!!!!

Whether you donate and/or walk with us - we appreciate your support for Jack!

Walk With Jack Jack

By ALSTROM SYNDROME INTERNATIONAL

Walk With Jack Jack

Weber Middle School Track - Walk with Jack and show your support!

Team Members