[ad_1]
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…
[ad_2]
