Raise the Volume for 5p- Syndrome

On Saturday, January 31, the Cri du Chat Research Foundation (CDCRF) will host its Raise the Volume for 5p-Syndrome Fundraising event on behalf of a young boy named Liam and others impacted by this rare syndrome.

The nonprofit Cri du Chat Research Foundation was founded by the Leston family, who spends their summers in Rockaway and Breezy Point. “Our son, Liam is 12 years old and lives with this life altering rare genetic disorder. Our organization’s work surrounds advancing science for the development of genetic medicines to improve quality of life for Liam and all children and adults living with this condition,” Megan Leston said.

Cri du Chat syndrome (CdCS, also referred to as 5p Minus Syndrome) is a severe rare neuro-developmental syndrome that is caused by a deletion of genes on the fifth chromosome. It impacts one in 15,000 newborns annually, and the Leston family was unfortunately impacted by this illness.

The Syndrome causes many challenges, including muscle weakness and coordination deficits, apraxia of speech, swallowing issues and autism. Some children have major organ involvement such as heart and kidney disease or suffer from brain seizures. At just three months old, Liam started physical therapy, occupational therapy and speech/feeding therapy, all of which have continued through his lifetime. All individuals with Cri du Chat require lifelong support even with today’s interventions and therapies.

So for Liam and others living with this syndrome, the Lestons are hosting an awareness and fundraising event on Saturday, January 31, 7 p.m. to 11 p.m. at Our Lady of Grace (385 Avenue W) in Gravesend, Brooklyn. The event will include a dinner, non-alcoholic beverages (BYOB), dancing, and raffles.

An event description reads, “We’re coming together to honor children and adults living with 5p- Syndrome, raise awareness for this rare disease and raise $200,000 to screen 5,000 potential drugs — including gene therapies — using brain cells from individuals with 5p- Syndrome. This research is urgent, and we can’t do it without your support.”

Tickets are $50. For tickets and information on sponsorship opportunities, head to www.criduchatresearch.org/events. For more info, reach out to Megan.Leston@criduchatresearch.org