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July 29, 2014

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July 29, 2014

The cleftAdvocate Facebook page is an amazing resource for parents/families in the cleft community. I have never seen such a supportive group of people who are all so eager to give advise, share testimonies, and celebrate progress as this group is. As a young adult with a cleft, I'm aware that one day I might have a child with a cleft myself, and it is very encouraging to see these resources out there!

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2014

July 29, 2014

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July 29, 2014

The sense of community that they bring to the families affected by Cleft, is invaluable. There can't be enough education for the public and families outside of just the medical perspective.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

July 29, 2014

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July 29, 2014

The information found on the ameriFace/CleftAdvocate website, Facebook page, via its members, and by Debbie Oliver was paramount in helping us get insurance coverage for our daughter's most recent surgery. Not only were we welcomed with open arms, but we were overwhelmed by the vast amount of knowledge, support, and genuine care and concern offered. Thanks for such an amazing resource for families with children with facial differences. We couldn't have done it without you.

Ways to make it better...

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

More user friendly, visibly appealing website.....seems a bit dated in comparison to others.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

July 28, 2014

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July 28, 2014

What An Amazing Organization That Not Only Help Parents Of Children With Clefts..They Help Children Themselves In Reassurance That We Are Not The Only One's Out Here Dealing With These Daily Issues&Struggles

Ways to make it better...

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

Make More Events Threw Out The State

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

July 28, 2014

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July 28, 2014

We found cleft advocate ten years ago after our twenty week ultrasound showing our son would be born with a cleft lip and palate. This group of people were so welcoming , funny, supportive, encouraging and understanding. They continue to be the place we turn when we need advice, support or just understanding.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

October 7, 2013

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October 7, 2013

My name is Kerri and I am the mother to an amazing daughter named Ella. Ella is now 8 and healing from a bone graft surgery which is her third surgery this year alone. She was born with a unilateral cleft lip and palate. She was our surprise in the delivery room because it was undected through an ultrasound. So many questions, concerns and feelings. I had no idea where to turn or who to talk to. I stumbled across cleftadvocate/Ameriface thankfully! My emotions were everywhere and I had no idea where to begin, what to expect and needed to know there were others out there like her. I needed information and parents. I needed someone to tell me that it was going to be alright. That my daughter was alright. I needed before and after pictures. I needed someone to explain to me what was going on and what was going to happen in non-medical terms. Someone that has been there and done that. Ameriface has been that place. Whether it's to share experiences, pictures, give advice for pre op and post op, stories, help with a team, insurance, a shoulder to cry on, or just to brag about how awesome our kids are..They have been there with open arms. Our children go through surgery after surgery. Procedure after procedure. Therapy appointment after therapy appointment. We know how another parent is feeling without even speaking a word. It's been such an amazing experience and I am so thankful to be a part of it all!

Ways to make it better...

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

No changes. It's perfect the way it is!

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 6, 2013

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October 6, 2013

Our adopted son came home when he was seven-days-old. Although many would say that his face was not "perfect," to us he was beautiful. Chris was born with a moderately severe clefting of the lip, gums and hard and soft palates, left side.

Ignorance is self-defeating. Chris was turned
down by six other couples because they wanted a “perfect” baby, and in their ignorance, they passed up just that – the perfect – baby, our son.

Be that as it may, we were still concerned about being able to do all we could for our baby. Education was paramount, we knew that, but we needed more than education; we needed empowerment.

AmerFace accomplishes just that. As parents, we need more than step-by-step answers about lip closure on a baby, or getting your child to drink from a glass before palate closure; what do we do during those long months of healing from bone graft to keep our children comfortable and engaged when all they want to do is run and play? How do we handle bullying, speech therapies, self-image and what can we feed our children when they are not allowed solids for a stretch of time? What questions should I ask before each surgery?

Yes, I can get an education on line and at the library, but how do I educate my heart to help my child? Through AmeriFace and their FaceBook group CleftAdvocate. And that’s exactly what they help us to become: advocates for our children.

Ways to make it better...

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

I wouldn't change it.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

November 15, 2012

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November 15, 2012

I joined this when my son was born in December 2010 with Bilateral complete cleft lip and palate (hard and soft). Their facebook page has helped me to prepare for all that I have had to go through. I love being able to ask questions AND share all our successes with them and how they all understand. I know I will be using them many times in the future.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2011

November 7, 2012

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November 7, 2012

I am new to the cleftAdvocate group on Facebook but as a new to cleft related issues mom, I am very grateful that this group exists. My September baby has a unilateral, incomplete cleft lip and we are facing our first consult next week. I'm anxious and nervous but I deal better with the unknown through research and education so I love having a place to get opinions and experiences from others who've been through what we are facing. I've already asked questions and others have been quick with support and comments and I've already felt some relief with learning. Even though when we tell people about our son's cleft lip, others will tell me "oh, so-and-so that I know had that" so it seems so common yet we know no one personally that's been through it so it can feel lonely at times. I think AmeriFace is doing a great job not just with the technical side of things in terms of diagnosis, correction, etc. but they are really taking care of the personal side of things too for the children as well as the parents and the family as a whole. It is a wonderful thing!

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

July 30, 2014

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2 previous reviews - show all
October 10, 2013

I have been with this organization for about 8 years. It's got me eally tough times, celebrated good times and supported me through the whole roller coster. I will forever be greatful to have been g... more

July 30, 2014

I have been a member of this wonderful network of the most loving, caring, giving people for almost 10 years. I have to say that I couldn't have gone through some of the stuff I am reliving with my son without their loving support. When I first chatted with the founder on the phone it was amazing so touching to have an understanding person there to listen to me. I cannot say enough wonderful things about cA I love this community so much.

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When was your last experience with this nonprofit?

2014

October 10, 2013

I have been with this organization for about 8 years. It's got me eally tough times, celebrated good times and supported me through the whole roller coster. I will forever be greatful to have been given the privilage to meet so many of the families in person and to have gained lifelong friends. I constantly refer many to this network of friends for support, love questions. hope to meet some of you reading this real soon!

A. Kakiuchi (unilateral cleft lip) a proud mom to 8 yr old twins and a 5 yr old singleton (son born with a bilateral cleft lip and palate)

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

June 6, 2012

I'm so happy to know about this non profit and every opportunity I get I tell others who could benefit from it. It has made all the difference in my life and helped me through tough times. I know many people who the group has had a life changing impact. I have made life long friends.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

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Assist on-line or by telephone providing support and resources to patients and families; distribute feeding and outreach information locally/regionally; assist staff with administrative duties and/or fundraising. Volunteer