My husband and I have a granddaughter with AHC and have been learning as much as possible about it since she was diagnosed in 2011. The best information we have found is through the Alternating Hemiplegia of Childhood Foundation and their many volunteers and families fighting for their children. Their website is a wealth of information on AHC, the research being done to find a cure, the fund-raising efforts across the country, our connections to other organizations around the world, and most importantly, provides a meeting place for the families fighting for a normal life for their child afflicted with AHC. Hearing their stories can put your in awe of the strength, tenacity and love they display each and every day. Keep it up AHCF and your warriors!
I have only known about this great organization for a few years. But be assured that the Alternating Hemiplegia of Childhood Foundation (AHCF) does exactly what it claims to do…..help children with AHC and their families cope with the diagnosis, finding help amongst the AHCF community, raising awareness, and raising funds that almost entirely go toward research in finding a cure. I can’t say enough positive things about the people who serve the cause and work so hard to make life better for those afflicted with AHC. They give a priceless gift to those children and their families….the gift of hope.
My sweet grandson Declan has AHC. He has many more good days than bad and he is so blessed for that. He is 3 yrs old and still in 12mo. cloths partly due to the meds messing with his pituitary gland. He is speech delayed but saying more and more words all the time. He has even been saying short sentences lately. He is such a good boy and so sweet and silly. Love him to the moon and back.
A great organization that has come so far in such a short time. Proud of all the AHCH heroes and their family and friends.
Having a child with AHC is a world of confusing twists and turns, constant chaos, and unexpected chapters to turn next....but with the AHCF, I can breathe a bit easier day by day, and I always know where to turn for advice, wisdom, experiences, recommendations, etc. The AHCF has been a lifesaver for this mommas sanity and I am forever grateful!
Asher Cohen is my AHC Hero. He is my grandchild. The AHC Foundation is important for me because of it's fundraising for research and it's support of an AHC community. The research continues to progress. Hopefully, soon, together we will beat AHC.
The AHC Foundation has played a pivotal role in our lives with our AHC Hero. With a rare disease, it's so hard to find the right medical care, support systems and day to day life tips on how best to manage this disorder. It's such a comfort to have this knowledge base and community to lean on as our son grows. We are hopeful with the AHCF fundraising efforts, that we will find a treatment/ cure for this disease. Thank you AHCF!
This foundation continues to work diligently toward finding a cure for AHC. I am so grateful for everything this foundation does.
The foundation is working tirelessly to support the AAV Research project which will hopefully result in a cure for this awful disease.
AHCF is an amazing non-profit organization. The majority (over 90%) of their money goes toward their cause. Everyone I have interacted with from AHCF has been so passionate about the mission of the Foundation.
When I was told my daughter had Alternating Hemiplegia of childhood, I did not believe it. I googled information about this condition and it did not sound like my child. I was confused and frustrated. I contacted AHCF through email. i told them about my child and her symptoms. I received an email and we scheduled a phone call. A leader in AHCF called me and took her time to listen to my daughter's story. I explained her episodes and symptoms. i was reassured that these were all part of AHC. My questions were answered and we were welcomed into this group.
I was happy to learn of a Facebook support group and made wonderful friends. We3 can ask a question and everyone wants to help out. I never feel alone with the frustration of this disease. My daughter started to ask why her body did this. She was happy to hear that others go through this too.
We attended a family meeting this past summer. We felt so welcomed and excited. My daughter was able to meet other kids like her. We learned so much information that weekend. most of all we learned we are not alone. We also learned we are part of a wonderful organization that wants to find answers and hope for all of our children.
My niece was diagnosed with AHC as an infant. She has made such strides since then (she's 9 now!!) I am so proud and grateful to be able to watch her grow. I am also very thankful for this foundation for all of their efforts toward finding a cure. Thank you for all that you do.
The volunteers that run this organization are so dedicated to finding a cure for kids. Every effort is made to fund research projects and spread away to put an end to this debilitating disorder.
I appreciate this organization for all of the resources and Direction they gave my family while we were in the process of getting my daughter diagnosed. The ongoing support they provided mentally and emotionally I can never repay. We love them for all that they have provided for us and look forward to a cure for my child and the many other children that suffer from this rare genetic disease.
From the day my daughter was diagnosed with AHC the AHCF has been an incredible source of information and support. When you have a child with a rare disorder being able to reach out to others that have experienced the same thing is so comforting.
I am a parent of a 30 yr old daughter with AHC. Since she was 12, I have had the support, expertise and friendship of a group of dedicated parents, and expert doctors. The AHC foundation helped me understand what AHC so I was able to advocate the right care for my daughter. I have learned to be an advocate, access expert advice and gained life long friends. The AHC foundation encourages parent involvement and offers a family meeting every two years that gives the latest studies to find a cure for AHC. My daughter's quality of life has been improved because we as family are involved in Alternating Hemiplegia of Childhood Foundation
AHCF has been a lifeline for my family dealing with a rare (1 in a million) neuro disease when even the big research hospitals near us knew very little about how our life would change caring for our beautiful daughter diagnosed at 2 yrs with Alternating Hemiplegia of childhood.
They keep updating the website making it more and more user friendly as well as keeping updating articles and research information links on the website. It is maintained and updated by parents of children with AHC making it even more useful for other families as well as doctors who might not know much about this very rare condition.
Thank you AHCF for all you do.
Ahcf is an amazing foundation that always strives to find more funds to support research that is so needed.
AHCF continuously strives to raise funds for research
This foundation continues to put 100 percent effort in to raising money for research to end Alternating Hemiplegia of Childhood.