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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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
Rating: 5 stars  

1 person found this review helpful

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!!

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

touch so many more families!!

How frequently have you been involved with the organization?

About every month

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

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.

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

spread awareness on a much, much larger scale...

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
Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

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.

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

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

raise greater awarness sooner so that Doctors make checking for Cranio compulsary.

Ways to make it better...

i had heard about it sooner

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

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

How frequently have you been involved with the organization?

One time

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

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

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

that there is support and understanding. And during such a scary time when your child needs surgery, or something changed in them due to cranio, and we are scared, someone is always there.

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

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

having met other families going through similar situations and having unlimited support.

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

awesome, loving, caring , and the absolute best

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

have more cranio awareness

Ways to make it better...

nothing could be better.

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

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-1-01

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Review from Guidestar
Role: General Member of the Public
Rating: 5 stars  

5 people found this review helpful

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.

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

the way it is raising awareness for craniosynostosis through their own website and through Facebook.

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

the support I have received from other families facing the same diagnosis as we did.

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

raise awareness by providing information to pediatricians nationwide so that craniosynostosis would no longer be misdiagnosed as it so often is now.

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  

8 people found this review helpful

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!

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

all of the friendship I have made and all of the help they have offered.

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

change the world!

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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