Chromosome 5p Deletion Syndrome Awareness Week

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Join the 5p- Society and help bring awareness to a Rare Genetic Syndrome

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What we have learned during the pandemic is that our children are very adaptable.

May 1-10, 2021: International Chromosome 5p Deletion Syndrome Week
May 5: 5p Deletion Syndrome Day.

The 5p- Society of North America, along with families and support organizations from over 95 countries, are bringing awareness of 5p Deletion Syndrome also known as 5p Minus (5p-) Syndrome. This genetic condition is caused by a permanent deletion on the “p” arm of the 5th chromosome. The 2021 awareness campaign celebrates these unique individuals by raising awareness around the world through education and community events, such as the “Faces of 5p-“ campaign as well as a Virtual 5K for 5p- event, among others.

The 5p- Society’s mission is to maximize quality of life of individuals with 5p- and their families. One way to improve the lives of individuals with the syndrome is by creating more programs that bring families together. The 5p- Society encourages families to focus on what the individual with the syndrome CAN DO; SEE the PERSON, not the disability; and to PAY FORWARD and educate others on what they have learned about the syndrome and their loved one. Zoom talks on topics of interest have begun as a new way to keep families engaged and educated during the pandemic.

“What we have learned during the pandemic is that our children are very adaptable. Let’s face it their world has been turned upside down. They are very social individuals and to not have the ability to socialize with their peers has been very traumatic for them.” Says Laura Castillo, Executive Director of the 5p- Society. “They (individuals with 5p-) do however have a very difficult time with remote or virtual learning. Parents are having to work their own jobs remotely while monitoring and teaching their child with a disability.” Laura continues, “We are all doing the best we can during these trying times.”

“I encourage you to take part in a COVID-19 Stay at Home Virtual 5K, post educational posts on social media, and wear your striped socks and your 5p- gear,” says Nick Wallace, President of the 5p- Society. “The only way to stop people from being given antiquated information and for families to not be left unconnected is for us to make our voices heard.” Nick encourages families to be bold, reach out and connect families to one another, especially through social media.

In an ongoing effort to raise awareness, members and supporters are encouraged to participate in events throughout the week.

  • Stripy Sock Campaign: Wear striped socks, one long, one short, representing the whole and deleted fifth chromosomes, especially on May 5th. #stripysocks
  • Face of 5p- Campaign – We will soon be flooding our Social Media pages with pictures and bios of our children and adults with 5p- during awareness week and beyond. Learn a little more about each of our kiddos and how truly awesome they are.
  • Virtual 5k for 5p-, to raise awareness and money for programs that benefit the 5p Deletion Syndrome community. A Virtual Walk can be anything you want it to be, a walk, a run, a STAY HOME picnic, or any type of event. Over 50 “Teams” have been created all over the world. #5pminus5k. Some families have postponed their events until they can safely have them in their communities.
  • Where in the World is C5? In an effort to encourage worldwide participation, we are asking families to pose for a picture with C5, the mascot of International 5p Deletion Syndrome Awareness Week (named C5 for Chromosome 5) and share their picture on social media using the #SeeC5 and #criduchatawareness. Looking forward to seeing pictures from around the world and maybe even with a celebrity or two!
  • State Proclamations have been applied for and received from several state Governors around the USA.

For more event ideas, please visit https://fivepminus.org/event/awareness-week-events/

About 5p Deletion Syndrome: Identified in 1963 by Jerome Lejuene, a French physician, 2020 marks the 57th year since its discovery. Each year, approximately 50-60 children are born with 5p- Syndrome worldwide. It is often characterized at birth by a high-pitched, “cat-like cry” caused by an underdeveloped larynx and weak breath support. For this reason, it was previously called “Cri du Chat” or “Cry of Cat” Syndrome. We have since learned that the syndrome may be misdiagnosed early on due to the absence of this characteristic; hence our emphasis on the more medically accurate name of 5p Deletion or 5p- Syndrome.

Other characteristics include low birth weight, poor muscle tone, microcephaly and potential medical complications. The severity of the disorder varies among individuals and can be considered a spectrum disorder. Symptoms go from mild and unnoticed, which causes a delay in diagnosis, to severe where the individual requires to be cared for 24/7 and will require ongoing support from a team of parents, therapists, medical professionals, educational professionals and extended family members to help the individual achieve his or her maximum potential.

About the 5p- Society: The 5p- Society was founded in 1986. It is a non-profit organization that works to empower families with knowledge about the syndrome, facilitate connections, support research, advocate for improved prognosis and to enrich the lives of individuals affected by 5p- Syndrome and their families.

Visit us on the web at http://www.fivepminus.org, @5pminus, #stripysocks #5pawareness #5pminus5k #5pminus #SeeC5 #5pmighty #Facesof5p-

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Laura Castillo
@5pminus
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