Support Group for Rare Genetic Syndrome Hosts Annual Conference in Melville, New York
Melville, New York (PRWEB) July 24, 2013 -- Starting July 25, 2013, Five P Minus Society, the American support group for caretakers of individuals with Cri du Chat Syndrome, is hosting its annual four-day conference and family meet-up in Melville, New York at the Huntington Hilton.
Cri du Chat (also called 5p- Syndrome) is a rare genetic syndrome caused by a deletion in the “P” region of the fifth chromosome. French for “cry of the cat,” the syndrome is named for the distinctive kitten-like sound that infants affected by the syndrome make when they cry. Every year approximately one in every 35,000 newborns is born with the syndrome.
“Even in a major metropolitan area like New York, there are only a handful of people affected by the syndrome,” says Laura Castillo, Director of 5p- Society. “It’s not uncommon for caretakers to have never met anyone else affected by Cri du Chat.”
In 1986, a small group of Cri du Chat families began meeting every year to share information and common experiences. According to Castillo, this group evolved into the Society and their meet-ups into the annual conference. Today, the conference is hosted in a different city each year and is attended by families from across the U.S. and from overseas. This year, a contingency of New York metropolitan area families is hosting the event on Long Island.
At the conference, the Society will sponsor educational workshops on topics ranging from behavioral management to using personal computing devices as communication aids. A conference highlight will be a free concert by Rachel Coleman, the producer and star of the children’s television series Signing Time! Coleman’s show focuses on teaching American Sign Language to youngsters and is popular among caretakers of special needs children that have communication delays; a common symptom of Cri du Chat Syndrome.
More important than the conference’s educational information is the connection caretakers make with other families affected by the syndrome. “This is especially important for the parents of newborns who have never been to one of the Society’s conferences and may be unsure about what to expect,” says Castillo.
Oceanside resident and 2013 conference planning committee member Kathryn Lindholm agrees. “The information presented at the conference workshops is valuable, but what keeps our family coming back to the conferences is the connection we’ve made with the other Cri du Chat families,” says Lindholm, whose daughter is affected by the syndrome. “The families communicate frequently through the Society’s Facebook page, but because we are spread out all over the country, this is the one time each year that we have an opportunity to connect in person.”
Connecting with other families that are dealing with similar issues can alleviate some of the uncertainty that comes with raising a child affected by a disorder as rare as Cri du Chat. “When my daughter was a baby, the biggest take-away from our first conference was seeing how well the caretakers of older children were doing,” says Stephen Furnari, father of Katie, a four-year old affected by syndrome. “Seeing that these other families were OK gave me comfort that my family would be as well.”
Furnari, who grew up in Centereach and now resides in central Florida is excited to be “coming home” to Long Island. “My extended family still lives in Suffolk County,” says Furnari. “With the conference being so close to home, this year my parents will have an opportunity to attend the conference and further participate in Katie’s care.”
About The 5p- Society and the Annual Conference
The 5p- Society (five p minus) is the support group for families and caretakers of individuals affected by Cri du Chat Syndrome (also known as 5p- Syndrome or Cat Cry Syndrome) and is the sponsor of the four-day Annual Cri du Chat Conference that begins on July 25, 2013 at the Huntington Hilton in Melville, New York. The Society encourages and facilitates communication throughout the Cri du Chat community and spreads awareness and education about Cri du Chat Syndrome and best practices for treating those affected by it.
For more information about Annual Conference, including information for medical professionals about diagnosis and treatment of the syndrome, visit http://www.fivepminus.org.
Stephen Furnari, 5p- Society, 917-597-9257, [email protected]
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