CRANIOSYNOSTOSIS & POSITIONAL PLAGIOCEPHALY SUPPORT INC.

Rating: 5 stars   9 reviews

Issues: Education, Health

Location: 114 N Elm Street Massapequa NY 11758 USA

Mission: Craniosynostosis and Positional Plagiocephaly Support, Inc. is an international nonprofit organization established in 1999 and headquartered in Massapequa, NY.  We are dedicated to helping families find support and information to help deal with craniosynostosis and positional plagiocephaly. Our goals include raising awareness with the general public, doctors, health care organizations, parent’s and loved ones. Offering support and information to all the families to all the families out there dealing with these two conditions so they can have as much information to help them with their many options.
Geographic areas served: Worldwide
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More Info

EIN 57-1091027
5162327015
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

When my child got diagnosed with Craniosynostosis, we were terrified. Craniosynostosis and Positional Plagiocephely Support (CAPPS) had a great website and facebook page with tons of guidance and support. It really made things easier on our family going through surgery.

I've personally experienced the results of this organization in...

The amount of support I found through CAPPS. I also received a beautiful blanket for my son's surgery and he will always treasure it.

If I had to make changes to this organization, I would...

Have more events across the US

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Rating: 5 stars  

1 person found this review helpful

My daughter was diagnosed with Craniosynostosis at birth. Having never heard of it before a lot of researching was required. I found CAPPS and was immediately welcomed and made to feel like my questions/concerns were valid and normal. The support, love and knowledge of all the women and families I have connected with thru CAPPS has been my Godsend. CAPPS is the reason I made it through my daughter's skull reconstruction!

I've personally experienced the results of this organization in...

the way families and women are equipped with knowledge about Craniosynostosis.

If I had to make changes to this organization, I would...

Do things no different than Amy does them! She does an amazing job!

What I've enjoyed the most about my experience with this nonprofit is...

Meeting and connecting with other moms going through the same diagnosis and surgery my daughter had to have at 4.5 months old.

The kinds of staff and volunteers that I met were...

Amazing!

If this organization had 10 million bucks, it could...

Educate, empower and financially support families needing help with medical costs incurred from surgeries and procedures related to cranio.

Ways to make it better...

It could not have been any better!

In my opinion, the biggest challenges facing this organization are...

Lack of general knowledge about Craniosynostosis. Also, the lack of exposure to and from doctors.

One thing I'd also say is that...

I have shared CAPPS kids to countless people! The work done by this organization is simply life changing!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

There for me every step of the way. I never heard of Craniosynotosis until my baby was born with it and these people had all the information that I was looking for. I couldn't have made it through surgery without the support from people that knew what I was going up against. They perpared me and kept me strong when I needed it most. THANK YOU!

What I've enjoyed the most about my experience with this nonprofit is...

Everyone has been down the same path.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Review from Guidestar