My Nonprofit Reviews

anna6 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits


197 profile views
1 reviews

Review for Craniosynostosis & Positional Plagiocephaly Support Inc., Massapequa, NY, USA

Rating: 5 stars  

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...


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?


Role:  Client Served & I received incredible support from CAPPS!.