Five P Minus Society Co-Sponsors the Second Annual International Cri Du Chat Awareness Week

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U.S. support group for caretakers of individuals with Cri du Chat Syndrome educates the public and healthcare professionals about the rare genetic disorder.

Starting May 5, 2013, 5p- Society, the American support group for caretakers of individuals with Cri du Chat Syndrome, is co-sponsoring the Second Annual International Cri du Chat Awareness week.

Cri du Chat (also called 5p- Syndrome) is 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.

Because the syndrome is so rare, even in densely populated metropolitan areas like New York, Miami or Los Angeles, it is not uncommon for medical professionals to have never seen a case or even be aware the syndrome exists.

“This year our plan is to build from the momentum we have from last year”, says Laura Castillo, Director of the 5p- Society. According to Castillo, community outreach since Awareness Week 2012 has been significant.

In the past year, 5p- Society’s new member enrollment increased threefold, and the number of people participating on the Society’s Facebook page has increased by 700. Castillo attributes this change to efforts made by member families spreading awareness about the syndrome.

An interesting result of the Society’s awareness efforts has been increased participation among caretakers of older individuals affected by the Syndrome. “Social media was not available when these individuals were first diagnosed,” says Castillo. “Many families have gone years without knowing, seeing, hearing, comparing or connecting with another parent.”

According to Castillo, when caretakers connect, share and learn from other caretakers they feel more confident advocating for their loved one with doctors, therapists and teachers. This is particularly true for those with unique medical needs, like feeding tubes, which is common among young children with the syndrome.

To celebrate Awareness Week in the U.S., 5p- Society members are hosting a variety of events around the country that range from fundraisers, public relations campaigns and seminars for healthcare professionals.

To aid their members efforts, the 5p- Society has added resources to its Awareness Week website, located at http://www.criduchat.org. Included among the new resources is a 4-minute video entitled “I Can” that demonstrates individuals with the syndrome doing things the medical profession once told families that they would never do.

About The 5p- Society and the Second Annual International Cri Du Chat Awareness Week

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 a co-sponsor of the Second Annual International Cri du Chat Awareness Week that begins on May 5, 2013. 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 International Cri du Chat Awareness Week, including information for medical professionals about diagnosis and treatment of the syndrome, visit http://www.criduchat.org.

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Laura Castillo
director@fivepminus.org
888-970-0777
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