Alternating Hemiplegia of Childhood Foundation is a non-profit organization that is doing incredible work for a worthy cause. As I have participated in events organized by AHCF, donated to, and followed this organization it is clear that the board members leading are dedicated, hard-working, highly vested people who deeply care about the cause of AHCF.
One of our brightest days was Feb 11, 2011 when our granddaughter Kathryn was born. One of our darkest days was a few months later when we found out she had been diagnosed with AHC (Alternating Hemiplegia of Childhood), a rare neurological disease affecting one in a million births. However when our son and his wife discovered the AHCF (Alternating Hemiplegia of Childhood Foundation Inc) the sun began to rise again. Here at this organization we all found an AHCF family of those fighting for their children, researchers fighting for a cure, information on the disease, ways to help raise funds, links to other organizations around the world, connections for encouragement, and most important of all, hope. We have joined the ranks of volunteers to help this organization continue their work as warriors in the fight to END AHC.
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!
Up until a couple years ago, I, like most of the general public, had never heard of AHC. I learned of this nonprofit through family friends, whose daughter Estella, suffers from this horrible illness. Every day, they are plagued with the question of whether today will be a "good" day for their daughter, or a day filled with episodes of paralysis, waiting for their daughter to return to her "normal" self. Their story, and their faith through this journey have been inspiring to say the least. We are so hopeful, that a cure through gene therapy will be found, and their lives will be forever changed. We were able to participate in a race for AHC a couple weeks ago, in hopes that we might raise awareness and show support for the AHC community. We pray for sweet Estella and the other families who are affected by AHC daily.
I was surprised by how much information this nonprofit was able to provide. Being new to AHC I was not aware at all of the community and how well connected they are. This foundation was through with their information, showed how help could be used, allowed for me to donate time and money and then was not oppressive about further communication.
I participated in an inaugural 5K race for AHC. We had a great turn out and it was very well ran (pun intended). The money raised is for a great cause and the whole process from ordering t-shirts and donating money to showing up on race day was easy to do!!
My granddaughter has AHC. The AHCF has a vital part in helping her family with answers to AHC. Many doctors have not heard of AHC and do not know how to treat their patients. AHCF is a great organization for her family to find others who suffer from the same disease and to see how they are dealing with it on a day to day basis.
AHCF was a priceless resource when our daughter was diagnosed with AHC in 2019. I made an inquiry on their website, and I received a return call from a board member and AHC parent within a matter of hours. When every doctor you go to tells you they've never heard of AHC, even the diagnosing doctors, having the opportunity to talk to someone who has been walking this path for years is an indescribable comfort. Thank you, AHCF, for everything you do for those affected by AHC!
This nonprofit is working for hope, treatment, and a cure for AHC kids. This rare disease needs research, funding, and a cure!
The AHCF has been extremely important in our life with our son who has Alternating Hemiplegia of Childhood. Living with a rare disease can keep you isolated, feeling alone constantly, but the AHCF keeps everyone connected, positive, and always hopeful for a cure!
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!
I walked/ran a 5k for Estella Henderson.
Everything was so well organized and fun!
Thank you for the wonderful support you give families living with this stressful disease. As a Grandma to Stellie I would do almost anything for a cure!
Great organization! So close to finding a cure but in need of the necessary funds for research to continue pushing forward. Bless this cause and pray for a cure!
Our friends daughter, Estella Henderson, was diagnosed with AHC last year. I have learned so much about AHCF in the last couple months while organizing an event in our small town for the race to a million steps for a cure. This foundation is doing great things and I’m so thankful these families now have hope because of all the work that foundation is doing and that someday soon this money can be used to find the cure and end this disease!!
We first met Sean as an infant! His contagious smile brightened our lives and eyes lit up when his parents entered the room. May his story, his family’s strength and leadership continue to bring hope and comfort to many! ❤️
I've know Sean Gerber since he was an infant. At the time his parents were starting the fight for AHCF.
Sean has grown to be a young man with a tremendous personality. He is true and sincere and, if you give him your cell phone #, he will be your friend multiple times a day :) !!
My beautiful niece has this disease, and her family is the best! This family goes above and beyond raising money for this foundation, and it's simply amazing how much AHC Foundation has done with that money. I also love how transparent they are with what research they are doing and what discoveries they have made!
This organization is awesome. It has helped my niece for many years. It has created a sense of belonging and support which is badly needed for the families this condition affects. I am greatful Alternating Hemiplegia of Childhood Foundation is actively supporting this community.
Alternating Hemiplegia of Childhood Foundation (AHCF) is an awesome organization! AHCF provides many opportunities for families and friends to learn about the condition and resources to help. The forums they provide at their fundraisers are very welcoming and safe. They amount of contact they provide with experts in the field is great for families who have so many worries and questions. My Niece was diagnosed in 2012 and is doing as well as she can because of her parents and the support they found in this organization.
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.
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.
AHCF has been a source of support and information from the first day my daughter was diagnosed with AHC in 2014. I sent an email to their website and got an immediate response with info about the disorder, possible doctors in my area, services and an invite to their family meeting later that year. I was so impressed that I joined the board and now work towards finding a cure and helping as many families as possible.
I've been part of AHCF for many years and they've always been very supportive. This year was a particularly significant in terms of support. My son, who has AHC, was hospitalized for two months and I was put in contact with a neurologist on the medical advisory board to consult with my son's hospital neurologist. The sharing of information and advice was invaluable at a time where local doctors were very confused about my son's condition. Thank you AHCF!
AHCF always has someone to get you the support you need. It has a great panel of physicians advisors and the majority of its fundraising goes to medical research. It's Family Conferences are definitely worthwhile to attend!
My niece deals with AHC. Our family are strong supporters of the Foundation for years. The people are amazing and their drive to help others is off the charts. The education material is also great
Thank you AHC Foundation for all you do and for keeping the fight strong.
What an amazing organization to support!! My niece has a child with this terrible disease and it is so humbling to see what they do for him. Every day is a struggle but they remain positive and do everything in their power to do what is best for him.
They do a golf tourney/fund raiser every year.
What an amazing group of people to support! They've been through so much in their lives, but yet remain so strong for those who are challenged with AHC.
Fantastic charity organizations for research childhood disease. Helping families support each other for greater cause in same situation.
Watching a friends daughter struggle with this disease is frightening at times. Her and others need help through donations!
It is a privilege to work with this amazing organization. The Board of Directors volunteer hours and hours of their time to help run the organization, support families and raise funds for research. They are transparent and I love that so much of my donation goes directly to research!
My Friends daughter has AHCF and I helped him with a fundraiser that he did for AHCF. The foundation was great with supplying information to give to potential joiners .Also very good in explaining what they would be doing with the money they raised. I also love the updates they provide on the research and ideas they give on helping families with support. I loved helping my friend and his daughter knowing what they are doing for there special kids with AHC.
I have a friend who's daughter has AHCF and they do all kinds of fundraising to help the foundation. She is one great kid and has a great out look to life. I try to help in anyway I can to help out and fine a cure for them So anything that can help this kids please get out there and do
We love the work AHCF is doing for AHC families! They have work tirelessly to support AHC families and further AHC research. They have supported us and given us lots of information to help us along this wild and crazy journey.
The AHCF has recently awarded Vanderbilt & Northwestern University 247,670.00 to fund the 6th phase of research on the the cellular and molecular defects and how to correct these defects. This is very exciting!
Positive experience with this charity and I will continue to donate.
We greatly appreciate AHCF's role in supporting families of children with AHC and helping to find medical support to treat and cure this condition.
I was invited to attend a Family Meeting in Indianapolis in July 2016 (I live in Northern Alberta Canada) so I could share our story about our daughter, Danielle, who sadly passed away in 2013 after living for 36 1/2 yrs. with AHC. She was believed to have been the 3rd person in Canada diagnosed in 1979 with this disorder and we clearly charted an unknown path with her. I came away from the meeting having shared our story and having learned so much about the tenacity of the parents and children who battle this disease. The Foundation is made up of an amazing group of people , including parents. They all give so much love and care to each and everyone they encounter. I was a stranger to them but felt like part of the family by the time I left. My one big regret is that Danielle never got to benefit from the incredible work that is being done to fight AHC. She was definitely there in spirit though as I chose to speak on the anniversary of her 40th B-D and she lifted me up. I trust that my message will give the parents the strength to keep going - there will be an answer some day & may God bless everyone who is looking for that answer.
My best friend's daughter has AHC, and I have been very impressed with the support and information your organization provides, not to mention the research and advocacy it engages in on behalf of those with AHC.
Our daughter (22) was diagnosed with AHC six years ago. AHCF has been funding research for this rare disease for over 20 years. Their funding helped medical researchers identify a common gene mutation which led to more research on the brain, molecular models and drug compounds. This work, in helping AHC, may also help other brain diseases. Every two years AHCF organizes a family meeting which connects families from around the world and the medical community. We are grateful to the board - a dedicated set of parents - who make it happen.
I am the mother of a 31 year old daughter with AHC. We have recently returned from the family meeting in the USA from New Zealand. How great it was to meet other people wth this condition and to see how hard the board members and parents work to educate and help us in all aspects of this disability. There is a wealth of information they have brought together for everyone to share.
AHCF is an amazing non-profit. It is led by incredibly dedicated parents and focused on making every dollar work as hard as possible for advancing research, understanding, and treatments for this rare disorder. I couldn't be prouder to be associated with them.
Responsive and responsible organization dedicated to raising awareness about AHC and supporting research into treatment and a cure. Dedicated staff. Incredible board and volunteers. Very transparent in their financials.
The AHC Foundation has remained committed to kids and adults with AHC for over a decade. They contribute on all levels and continue to help move research forward while serving as a great resource for families and their doctors. It is amazing that such a strong, committed group can do so much for such a rare disorder.
I have been on the board for over 15 years. The board is made up of volunteers who have children with the disorder and work incredibly hard to increase awareness. The support the organization provides to families is incredible with a family meeting in different places across the country, bringing doctors and families together for support. There is only one part time employee who handles the administration and acts as medical liaison. The rest of the money raised goes to research and family support. A small organization with a very big heart!
Our family has been in contact and volunteered for the AHC Foundation or 3 years now. They have been a huge support for our family and have answered any questions we may have regarding the health and well-being of our son. Not only have the partnerships between families been strong, we are aware of where the funding is going and are updated about the research opportunities and strides made by the foundation and the partnerships working toward finding a cure.
The AHC Foundation is a great non-profit to help and the children desperately need a cure. We are thankful that AHCF has been working toward that goal and continue to update families on progress.
AHC and the AHCF are very near and dear to my heart. My younger sister, Kathleen, suffers from this rare neurological disorder that is characterized by unpredictable, often painful episodes that leave her temporarily paralyzed, either partially on one side or on both.
Our foundation, the AHCF, is a nonprofit organization supporting AHC patients and their families. The foundation supports research to identify the causes of AHC, develop effective treatment protocols, and ultimately find a cure. Through the education of healthcare professionals, we promote early and proper diagnosis of the disorder.
I have been around since the foundation's inception in 1993 and let me tell you the AHCF is amazing. Despite the miles between patients, researchers and physicians, (AHC is a rare disease), this foundation is the little engine that could. I have seen this foundation develop with my own two eyes, from fundraising by families and years of limited research, to what is being done NOW and my goodness are they on their way!
Since the beginning, AHCF has always been about community and support – I remember my mom, current President of the AHCF, staying up to all hours of the night speaking to parents about their child – whether they be recently diagnosed or struggling with AHC. For years, AHCF produced a newsletter – typed and mailed (yes snail mail), full of updates, advice and information. Why? Because this foundation has always been about the AHC patients & families, providing as much information and support as humanly possible. Talking about overcoming obstacles, not only were these parents caring for their children with AHC, but they were doing it at a time with little resources and connections… there were no search engines or email – the phone was their lifeline, all they had was each other. Getting in contact with other parents, getting a diagnosis, finding a neurologist who was familiar with AHC... was no easy feat.
Now with the internet, things are so much easier – especially when it comes to awareness, so that patients can be diagnosed much quicker! The power of things as simple as Google, email, having a website and social media, have made a huge impact on the AHCF. In 2010, AHCF participated and won the online voting contest Pepsi Refresh. The win allowed AHCF to begin DNA sequencing. The first gene mutation that causes AHC was discovered in 2012 – The same gene mutation is also responsible for Rapid Onset Dystonia Parkinsonism (RDP)! In the last five years, AHCF has been able to fund various research projects in the United States and abroad. We are in our fourth year of research at Vanderbilt and Northwestern Universities. Answers are coming! We have an outstanding board of directors and medical advisory board that are the driving force behind the AHCF.
I can’t stress it enough that there is such a sense of community and willpower within this foundation! Patients, families, physicians and researchers travel across the country and sometimes world, in order to be diagnosed, meet other families, gain more knowledge of the disorder and collaborate. Family meetings and medical symposiums are absolutely priceless when it comes to our foundation... the chance to hear from our researchers, the chance to meet other AHC patients, the chance to be together as a community – truly magical.
I have had the pleasure of meeting many of the amazing and inspiring AHC kids and adults and would love to find a treatment for this disease! Fundraising for AHCF is worth every minute of my time because I know that 100% of the proceeds go directly to the foundation. I was lucky to have played a major role in our recent fundraiser here in California – Wine Women and Shoes. The amount of support in the form of sponsorships, donations, volunteers, etc. was astounding!!! Everyone I came into contact with loved what we were doing and wanted to be part of it! We have received countless feedback from our guests and donors inquiring when we will be doing this event again and how they would love to contribute again!
Supporting our nonprofit foundation is kind of like supporting the Mom & Pop store instead of the Giant Chain Store --- your funding goes right to the source: straight to research, education and awareness. Donors are making an excellent decision when they choose to donate to AHCF – volunteers are making a wonderful decision when they volunteer their time and talents for AHCF – your money, your time, your support, WILL HELP THE AHCF GREATLY!
You want to make a donation or volunteer for a Great Nonprofit? Say hello to the amazing Alternating Hemiplegia of Childhood Foundation! We’re rare, we’re small, but we're doing BIG things and with your help, we will find a cure for AHC!
As a parent of a 23 yr old son with AHC, I fully understand the tremendous void this organization has filled, and continues to fill, in assisting families through emotional support, awareness of medical advances, ideas relating to solutions for day to day problems on such things as adaptive technologies, how to work with school systems on preparing a useful IEP, navigating the bureaucratic nightmare of medicaid, etc. They work to coordinate medical efforts to find a cure (or keep abreast of potential avenues of research) by working with multi-disciplinary doctors. Being such an extremely rare disorder that receives little attention from researchers, they provide some hope in organizing efforts that can hopefully provide some relief to the afflicted individuals and their families. I have been involved with this organization from its inception and know that they perform a vast array of services that may seem minor but are critical to maintain some degree of sanity and realism to the families. Sometimes just venting is needed, other times they will help hook up individuals with another family that is going through similar issues. With low cognitive skills and often extreme retardation, explaining what is happening to the AHC kid having, for example, a terrifying first experience with menstruation, can lead to feelings of inadequacy, loneliness, and depression. The family conferences that I've attended are always uplifting. Sometimes just reassuring new parents that they can make it through has a profound effect on their outlook. When your average family doctor or pediatric neurologist knows less than the man on the moon about AHC, it is a great relief to get assistance on where to find more information about this disorder. Being able to call and get a cheerful, understanding, and non-judgemental person to help explain what the future may hold or what medicines have seemed to be helpful is a great relief. Before this organization arose, it was not unusual to go through doctor after doctor claiming it's epilepsy (as in the early years with my son) and having him doped up on phenobarbitol despite no evidence of epilepsy on any EEGs. We need all the help we can get. This disorder is unlikely to have a day, week, or month named after it to promote awareness; Bono, any remaining Beatles, or Springsteen are not going to do a televised fundraiser for AHC. Living with it is a lonely ordeal that would be brutal without such an organization. I could go on but....by now I hope you get the point on how important this organization is to a group of kids who are marginalized just because they are few in number, and therefore unlikely to bring fame and fortune to researchers, drug companies, etc.
This wonderful organization makes a difference. The focus is truly on the kids and their families and they emphasize results, including funding the exciting discovery of the gene that causes the disorder. My niece and her family also rely on the support community to stay strong and manage incredibly difficult daily challenges. AHCF impacts their lives every day.
My niece has AHC and I've watched the organization steadily grow and mature since her diagnosis. I've had the pleasure to be involved with, and donate to, fundraising activities such as the annual AHC walk and AHC golf outing in the Chicago area. The organization is forthcoming and clear about how the donations are used in the annual update. I look forward to future progress.
AHCF has been a lifesaver to me and my family! The tireless efforts to raise funds for research and raising awareness of the disorder speaks volumes about those involved in the foundation. Truly would be lost without them. We can SEE the progress they are making for our kids and adults with AHC!
AHCF is an excellent foundation. They are very informational with regards to research. They always give ideas and thoughts on how to deal with situations that pop up when dealing with special needs children. Very upfront with where money goes that is raised.