STATEN ISLAND, N.Y. — With a New York Rangers theme, the fifth annual “Rally for Reed” is set for Sunday, Sept. 21 from 11 a.m. to 7 p.m. at Nansen’s Park in Travis.
Proceeds will be directed toward supporting 8-year-old Reed Rinon’s recovery from multiple surgeries.
At 2 1/2, Reed was diagnosed with Morquio A syndrome, an extremely rare genetic disorder caused by the body’s inability to process waste due to an enzyme deficiency. It affects approximately one in every 200,000 to 300,000 births.
Reed’s mom, Carolyn Billeci Rinon, explains Reed had another surgery in April at Nemours Children’s Hospital in Wilmington, Del. to remove the hardware from his previous surgeries.
“The recovery was a lot slower than expected,” she reported, but added the good news is her son is getting stronger each day.
“He is doing physical therapy as an outpatient as well as physical therapy and occupational therapy in school. This is our fifth annual ‘Rally For Reed at Nansen’s Park, with a New York Rangers hockey team theme.”
Rinon said organizers have a lot of new merchandise for sale that can be personalized the day of the fundraising event.
The hockey-themed family day will include musical entertainment provided by a deejay and a live band, Bingo, raffles, baskets, bouncy houses, cartoon characters, food and pizza trucks, face painting, lawn games, mini golf, a rock wall, rides, a pizza truck, and a candy wall.
To purchase tickets, follow the Instagram page @rally4reed and click the ticket link to access the ticketing page.
REED’S STORY
When the coronavirus pandemic was raging, Reed was diagnosed with Morquio A syndrome.
Proceeds from fundraisers not only help in Reed’s care and treatment, but also will fund research to find a cure for Morquio A syndrome.
The condition can cause progressive damage to a child’s central nervous system, spine, heart, organs, bones, joints, eyes, ears, and respiratory system and can even cause physical disabilities.
Children with Morquio A syndrome are missing or don’t produce enough of the enzymes that break down sugar naturally produced in the body.
The disorder affects approximately one in every 200,000 to 300,000 births.
Reed loves the New York Rangers, hockey, music and playing instruments.
“Our goal as the Rally for Reed Foundation, is to raise awareness for Morquio A syndrome,” Reed’s mom says. “All funds collected are to benefit the research of a cure for those afflicted with this rare, genetic disorder and to help aid families and patients in need.”
The Rinons have now formed the Rally for Reed Foundation Inc., in order to help better filter funds raised to donate to Morquio research. And they plan to host the fundraiser every year until a cure is found.
Those who would like to donate to Reed and the Rinon family may do so through Venmo @HelloMyNameisReed