Spreading awareness of 5p- syndrome around the world
LAKEWOOD, Calif., May 2, 2023 /PRNewswire-PRWeb/ -- May 1-15, 2023: International Chromosome 5p Deletion Syndrome Week(s)
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. Sixty (60) years ago, Dr. Jerome Lejeune discovered this genetic condition by noticing a similar characteristic in several patients that he had been observing of a high-pitched "cat-like sound" vocalization. After doing genetic testing on these patients, he realized the connection is caused by a permanent deletion on the "p" arm of the 5th chromosome. The 2023 awareness campaign celebrates these unique individuals by raising awareness around the world through education and community events, such as the 60 facts of 5p- syndrome, the "Faces of 5p-"campaign, as well as a Virtual 5K for 5p- event.
The 5p- Society's mission is to maximize the 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. Mini Family Meetups have been very successful where families from various states were able to meet, network, establish new friendships, but most importantly know they are not alone in this journey of raising an individual with the syndrome.
"One of our older individuals with the syndrome is a 64-year-old female (fourteen years before the syndrome was discovered). The parents waited until she was seven before getting the formal diagnosis." "Although both parents are now gone, they were instrumental in working on many of the laws we know today that help our community of differently abled individuals, as well as thousands of others throughout the United States." Says Laura Castillo, Executive Director of the 5p- Society. "So much has changed in the past 60 years. The biggest change is the prognosis of an individual with 5p- syndrome. The narrative has changed from 'your child will not live past his/her first year of life' to 'your child will create their own growth and development path, it's your job as the parent to nurture and provide the opportunities for that growth and development'." Laura continues, "As the saying goes, 'It Takes a Village.' Families, friends, teachers, and doctors are all instrumental in supporting and guiding our loved ones."
"I encourage you to create and/or take part in a 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. So much has changed over the past 60 years and it is time that our medical professionals stop giving information from the 1970s when so much new data exists. If they will not, it is time for us to." Nick encourages families to be bold, reach out and connect families to one another, especially through social media, and to give each other strength and most of all hope for the future.
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.
- 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, 2023 marks the 60th 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 #groovy5kfor5p #Facesof5p #thatshowweroll5kfor5p
Media Contact
Laura Castillo, 5p- Society, 1 562-804-4506, [email protected]
SOURCE 5p- Society
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