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September 18, 2011
1 person found this review helpful

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September 18, 2011
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.

The Great!

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.

Ways to make it better...

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

Have more events across the US

May 5, 2010
1 person found this review helpful

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Review from Guidestar
May 5, 2010
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!

The Great!

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

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

Ways to make it better...

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

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

More feedback...

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

May 5, 2010
1 person found this review helpful

more

Review from Guidestar
May 5, 2010
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!

More feedback...

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

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