If you’ve been following Lessons from my Daughter, I hope you have clicked on the 5P-Society link at the bottom of my posts, if you haven’t had a chance to, let me tell you a little bit about the 5p- Society.
What is the 5P- Society?
The 5p- Society (five p minus) is the parent support group for families having an individual with 5p- Syndrome, also known as Cat Cry Syndrome or Cri du Chat Syndrome. The 5p- Society is a 501(c)3 not-for-profit organization. Its Federal Tax Identification Number is 48-1022202.
To encourage and facilitate communication among families having a child with 5p- Syndrome and to spread awareness and education of the syndrome to these families and their service providers.
WHO ARE THEY?
The 5p- Society was founded in 1986 by parents of children with 5p- Syndrome, with the intent of spreading information about the syndrome to other families, and providing the opportunity to meet and share common experiences. The organization is run by its volunteer board of directors and one paid part-time staff person. The 5p- Society is a membership organization and maintains a database of families throughout North America and also international members. It relies on the donation of its member’s time and money to exist. Current membership is over 1000 families.
PROFESSIONAL ADVISORY BOARD
The 5p- Society has a Professional Advisory Board (PAB) comprised of professionals throughout the United States. The volunteer PAB oversees all research opportunities that are brought to the attention of the 5p- Society for review and approval. When a research opportunity is approved it is then announced to the general membership. Members of the PAB also present at the 5p- Society’s annual conference.
Find more about about Cri du Chat syndrome at 5p- Society