They truly are a wonderful group of people. They are not only there with information when you need it, but they are there to encourage you and help you in any and all ways possible. Without Debbie and all she has done for our family, we wouldn't be where we our today. We are greatful for everything AmeriFace has helped us with. Truly great people and organization.
I expected going to this conference to get information on having a cleft lip and palate. What I came out with was knowing what to expect in the long run what our son will be going through. It was very eye opening for my husband and I. We also met new friends young and older. I love how the speakers used words that were easy to understand and we're able to answer our questions. I was expecting more people to attend. I'm glad it was a smaller amoubt if people after all. We were all able to connect with one another on a more personal level. My kids all met great friends. This was the first time being outside of a medical facility that we were able to interact with othet cleft lip/ palate kidd and adults. We cant wait to go back and attend next year.
I've been a client, parent advocate and volunteer for 12.5 years, since the beginning when Cleft Advocate first formed. Debbie had just begun forming the organization, and I've been served as a parent of a child with a craniofacial difference and I've been a volunteer.
I would do it again in a heartbeat if I had to. This organization has done so much over the years. Hope it keeps on ticking for the next 12 yrs and more more to come.
Have been part of this group since 2002 when our son was born. Wouldn't trade it for the world. AmeriFace and it's programs are an absolute great resource for families and individuals with craniofacial differences. Always glad to participate when I'm able.
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.
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)
When our son was born with a cleft lip and cleft palate we didn't know what that meant, so beyond the shock of this when he was born, we started our research almost 9 years ago when the internet was just blooming. No wi-fi, all dial in, and we found AmeriFace and Cleft Advocate. They mailed us literature, and at that time a VCR tape, insert smiley, and talked with me on the phone to educate me on what a cleft was and what we needed to do.
Here we are 9 years later with a healthy active baseball player, four surgeries post, and very blessed to have organizations like this. I have referred many families to them, and support them financially when we can.
When your family recieves a cleft diagnosis, it can be overwhelming-at least it was for us. Finding reliable information is a godsend as we soon learn that cleft, though challenging, is navigatable. We watched the cleft feeding video over and over before our little one was born so we would have the confidence to feed her. Aside from needed support in the early stages this organization helps you as your child grows. Often kids need dental, speech, hearing and psychosocial support, not to mention help with health insurance. Ameriface helped me know what questions to ask doctors. Through the group, I have met adults with cleft. It is an awesome organization that makes a difference.
8 1/2 years ago I was blesses with a handsome little guy. He was born with a bilateral complete cleft lip and palate. I had no clue what to expect. I was offered great support and advice that I now share. Then in 2011 my oldest was diagnosed with Chiari 1 Malformation. Again, huge support :) very blessed to have had the great help I have received. Thank you!!
I am an adult with Goldenhar Syndrome. There were no groups to share information, understanding or compassion and empathy. We - my family and I were so very alone. because of the AMAZING work of this organization no one with a facial difference ever needs to feel alone again. For me, this is everything! I also have an amazing son who has a cleft lip and palate - this groups has excellent and well vetted informations!
I have felt so fortunate to have such wonderful people that I could get support from and ask questions .If not for this group I do not know what I would have done because there is no one in my area that could have given me the support and advice that I have recived I feel very bless to have come across this group