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Nonprofit Overview

Causes: Education, Health, Voluntary Health Associations & Medical Disciplines

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

Community Stories

9 Stories from Volunteers, Donors & Supporters

1 Summer E.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!

Review from Guidestar

1

Client Served

Rating: 5

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!

Review from Guidestar

1

Volunteer

Rating: 5

I have twins that have craniosynostosis and when we heard the news I headed straight for the internet! The first place I found was CAPPS. Everyone was so friendly and helpful!! Without CAPPS, I am not sure where we would be today!!

Review from Guidestar

1

Volunteer

Rating: 5

Prior to my son being diagnosed I googled every term I could think of. CAPPS was the first thing to show up in a search. It was my lifeline and armed me with the information I needed to appropriately advocate for him when so many doctors didn't know what was wrong or how to help. In raising awareness, families will not have to search so fiercly like we had to in order to find help. Every OB/GYN, every pediatrician and most definitely every pediatric neurosurgeon needs to fully understand this condition and the affects. And CAPPS is on a wonderful mission to raise awareness and support families going through it. Amy Galm is amazing and puts cranio families needs ahead of her own.

Review from Guidestar

1

General Member of the Public

Rating: 5

As someone from the uk, I only wish I had found CAPPS sooner. My son had an operation for Metopic Cranio back in March 2004. I had never heard of such a condition and was really scared. Although this was 6 years ago, I still feel very strongly about the lack of support that some people receive and that fact that there are delays in children being diagnosed. In my case, my son wasn't diagnosed until he was 18 months and was operated on at 2 years old. Thanks to CAPPS, questions can be answered and families can share their stories and support each other. A truly wonderfull organisation.

Review from Guidestar

1

General Member of the Public

Rating: 5

I am so thankful to have CAPPS in my life. I have support at my fingertips at anytime. Having a child with cranio, and him going through surgery was a very frightening thing, but knowing that there are people out there with such huge hearts makes things that much easier. I have met many wonderful families with similar stories because of CAPPS. xo

Review from Guidestar

5

General Member of the Public

Rating: 5

CAPPS is an amazing organization that provides much needed support and information to families facing a tough diagnosis. I don't know what I would have done if I hadn't found a support group after my daughter was diagnosed with craniosynostosis and we found out she needed surgery. CAPPS provided a place to turn to and get my questions answered as well as a place to help me feel that I wasn't alone.

Review from Guidestar

8

General Member of the Public

Rating: 5

CAPPS is a great organization that has helped my family tremendously from day 1, through the surgery, recovery, and beyond! I don't know where we would be without their support and knowledge. My family has met other great families and we have made life long connections. Thanks CAPPS!

Review from Guidestar