Education | Lessons from my daughter

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.

MISSION STATEMENT

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

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

#criduchatAwareness

With a rate of 1 in approximately 50,000 birth, Cri du Chat randomly appears 7 or

8 times per year in Canada. In a country covering 9.985 million squared km, these 7 or 8 babies can be really far away for one another.

For us, when Emily was little, it meant no other families were near by.

For us in 1999 when she was diagnosed, it meant that our only source of information was a really slow internet connection.

Fast forward to today, the internet is faster, facebook is full of support groups and many bloggers out there raising awareness.

I am one of these bloggers!

Cri du Chat Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications.

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

The term “5p-” is used by geneticists to describe a portion of the short arm (p) of chromosome number 5 that is missing.

Cri du Chat Syndrome is a spectrum disorder.

Children born with this rare genetic defect will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential.

Find more about about Cri du Chat syndrome at 5p- Society

If you’ve been following our blog for awhile, you know Emily is not defined by her syndrome!

Over the week, I will do my best to tell you more about Cri du Chat Syndrome!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter