Our daughter was officially diagnosed with AHC in 2024 and AHCF has been such a valuable resource for us and our family. They have helped us tremendously with paving a path and knowing what questions to seek out to get the best care for our AHC warrior. I don't know I would've done without the support from AHCF.
Two of our children are diagnosed with AHC. I actually found AHCF prior to their original diagnoses because I was questioning information given to us from their neurologist at the time about genetic panel results. Despite not yet having a diagnosis, AHCF accepted our family with open arms. They pointed us to research and doctors who know AHC. Within a couple of months, we had a new neurologist who was actually listening to our concerns for the first time who diagnosed our children and started treatment soon after.
AHCF has been such a wonderful support to us. We don’t have to feel alone in the world of rare disorders. For this our family is eternally grateful!
AHCF has been the most valuable resource for our whole family over the last 23 years as we navigate this complex journey with our daughter. We’re so grateful to have this community to rely on for AHC because it is so rare and not yet well understood.
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This family driven group continues to be critical to our family as we navigate the world of rare disease. This website keeps us up to date on current research, topics of interest and other families on our journey. The fundraising by our families has done an amazing job to attract and drive research into our children’s most challenging condition.
My niece was diagnosed with AHC at a very young age and is now in her early 20s. My family got involved with AHCF early on in her journey, to both fundraise and increase awareness of this terrible affliction. Now several decades later, AHCF has grown to become an invaluable provider of resources with a mission to help affected families & researchers understand, manage, and ultimately cure AHC.
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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.
My niece who is now 23 years old was diagnosed with AHC as a baby. This organization has been a wonderful resource and a great support for the family. Her immediate family as well as her extended family have participated in many fundraisers for this organization. Her parents have attended local and national conferences held by AHCF, all of which allowed them to advocate for their daughter and other children who are afflicted with this condition. Overall, this organization has done a great job of providing information, encouragement further research, and assisting parents in working with their child. Thank you!
AHCF is an amazing organization! Someone is always available to answer my questions and calm me down. Their involvement in research gives me such hope for a treatment that ends AHC. Thank you for being my support team!
It has been 5 years since our son was diagnosed with AHC and AHCF has been with us every step of the way. We had so many questions and worries, but we didn't feel alone during our journey. We have learned so much and continue to learn not only about AHC, but also important research that AHCF funds to help find a cure and how to advocate better for our child. AHCF provides great support and resources for families. We are blessed to have a nonprofit like AHCF.
My child is 3 and a half. He has AHC and without AHCF, we wouldn't know 3/4th of what we know. Many times doctors don't have the answers. AHCF has created so many resources, educational tools, support and a community to rely on. They donate to research to help find better treatment and a cure. Their website was the first of AHC I could find. They immediately connected me to other families who have a child with AHC. They welcomed me with open arms and for the first time I didn't feel alone. They work hard on connecting our families with scientists, Doctors, research teams and other sources. Taking our experiences and using them to find treatment and a cure.
This nonprofit cares about the families it serves and finding treatment and a cure.
I am a pediatrician and have worked with numerous nonprofits that serve families affected by rare diseases. The AHC stands out as a truly exemplary organization and has used their funding very effectively to support families as well as cutting edge research. A cure for AHC was once a pipe dream, but, thanks to this Foundation, is now becoming ever closer to a reality!
I was first connected to AHCF over 20 years ago when my daughter was diagnosed with AHC. AHCF has been there every step of the way. They are an all-encompassing foundation of members who are professional, passionate, and proactive when it comes to helping others navigate this life with AHC.
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I've been involved with AHCF since my daughter was diagnosed many years ago. The support and resources the foundation provides is invaluable. Serving on committees has opened doors to new friendships, and over the years, my role has morphed from being the receiver of support to providing support to the newly diagnosed families. This is my purpose, and I'm grateful I can give back in this way.
I volunteered for this organization during their Los Angeles event last year and all I can say is the are fully dedicated to creating a safe space for families to learn, share and simply be. What I was most impressed about this event is how they provided educational sessions as well as areas to just simply relax with friends, play, read and enjoy each others company. It felt like you were part of a family.
Fantastic organization with a strong sense of community. AHCF really brings families together while working towards their research goals. I have enjoyed my opportunities to volunteer at events and with merchandise for my sister.
As a volunteer for several non-profit organizations, AHCF is such a wonderful group of people serving an underserved and somewhat unknown community. The discoveries and work that this foundation has lead to have helped the lives of hundreds of children and families. And those working behind the scenes do so from an unbelievably selfless place. Every hour I've spent in this community has been rewarding and generous and an opportunity to spend time with some very beautiful humans.
As an AHC parent the foundation provides us with access to research and resources we otherwise wouldn’t be aware of. The sense of community that comes from a rare population is inspiring and we’re thankful for the connections the foundation has helped us make.
This foundation has provided me with valuable resources and connections as a professional supporting a young child diagnosed with AHC and their family. Since AHC is such a rare diagnosis it is imperative that there is a place for connections, collaboration and reputable information to support those in this community. I know that the family I have supported has also found valuable connections through this non-profit as well.
The AHC Foundation has been there for our family ever since our daughter was diagnosed 23 years ago. They assure funding for research that gives us hope for the future and provide family support which gives us the strength to endure daily living.
This has been a great resource for our family. We have made valuable connections with other families to help us on our journey with AHC.
My daughter was finally diagnosed with ahc at 16 months old. It was a very twisty road to get there, but we made it! Once we had the diagnosis we felt some relief but mostly confusion and fear. Jemmas PT therapist had another patient with ahc and got us in contact and she got me plugged into the AHCF. It was here that we found community. We found comfort in knowing Jemma wasn’t alone. I found an outlet to ask all my questions and share in our struggles and triumphs with people who completely understand. This organization has been the biggest blessing to our family. They have been the rainbow in our storm.
AHCF has been a vital support for our family since our daughter was diagnosed at 3 years old. We were welcomed into the AHC family at the Chicago family meeting by AHCF volunteers and families. Going to the AHCF family meetings has been a highlight during this journey. The connection with the volunteers over the last 22 years has given us an extended family. Their knowledge and resources have helped us advocate for our daughter. I am honored to volunteer with AHCF and provide support to other families.
The Alternating Hemiplegia of Childhood Foundation (AHCF) has provided us support, understanding, resources, and advice as we navigate this rare disorder. Both our 23 year old daughter who was diagnosed at 9 months and all of us as a family are very grateful. We could not imagine navigating this horrible neurological disorder without the assistance of AHCF. Words do not come close to express enough the appreciation we have for both the volunteers at AHCF and the other families affected by AHC. Thank you for all you do. This Foundation and what you bring to this battle against AHC is very much appreciated! With gratitude, The Franco Family
Our daughter was diagnosed with AHC at 3 months old - and within a couple days, someone reached out to us from AHC kids foundation. I have never been part of a non profit that is so family centered, and serve others on a constant basis. The people, the support, the research - it has been a huge part in our life with AHC! Thank you, AHCF!
The AHCF has walked with us through our entire journey, and I am grateful for the volunteers that have given their time over the years. I now have the honor and privilege to volunteer alongside some amazing people who work tirelessly to end AHC.
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My bestie’s daughter is an ahc warrior, Danyelle, here in Kenosha Wisconsin. It has been my honor and privilege to get to know this young lady and to help with fundraisers pre-pandemic. Looking forward to the day this disorder has a cure and no other family has to go through the heartache
My daughter was diagnosed at the age of 3 months with AHC. She lived to be 24 years old. We lost our sweet girl on Sept. 8, 2022.
We had so much help from the AHC foundation and the AHC support group. We got to go to conference and meet other families with AHC kids!.That was huge huge!! The support we had was absolutely fantastic! This year we have been blessed with meeting 4 AHC families! ❤ Thank you to the AHC foundation for all your love and support throught our AHC journey!
AHCF has had our back for almost 25 years. They were there when we learned of our son's diagnosis and have offered support every step of the way. This foundation works hard to help fund research to uncover a cure or treatment for this very rare disease. This is a wonderful foundation that I highly recommend.
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The AHCF brings a lot of value to our lives through hope and education. We are happy to continue to fundraise for this organization because of the value we get from them as an AHC family. They are good stewards of our funds. They are open to collaborations with other organizations which provides a lot of hope for the future of our children.
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Our daughter had been diagnosed with AHC this year, 2012. It s a scary and disheartening experience to be part of a group of families who deal with an extremely rare disorder. AHCF has been a great hub or information of many kinds. Social media, data, networks of families, research, and fund raising. Our family has only been courageous enough to sample these resources, but we have received a great deal of warmth and welcoming from those we have been in contact with. We find the director to be energetic, and passionate about funding himself out of a job. He is supported by capable people who share his enthusiasm. The organization has a contagious energy, that I know we will catch when we develop our courage to do so.
The AHCF has made an incredible impact on our lives. Through the foundation we have made friends and made an impact. Without it we would never have found the resources we needed to provide our son with the best possible care.
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Amazing charity! Well over 90% of the funds they raise go toward the amazing cause! They have great communication among social media, email, etc! We love the work that the AHC Foundation is doing for our friends!
From the very beginning of our granddaughter's diagnosis of AHC, the AHCF foundation has been there with support for her, her parents, her big brother, and all of those who love her. AHCF has provided support, guidance, a mission, and most of all, HOPE. HOPE that people see our AHC kids and families with love; HOPE that the research AHCF helps fund will be successful; HOPE that a cure is on the horizon.
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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.
I am a great aunt to Kathryn who is one of the kids with AHC and I’m thankful for this organization. They help people organize fundraisers to get families one step closer to curing their children. Ninety cents of every dollar goes for research and a cure to end AHC. They provide information to families whose children have recently been diagnosed and provide support for them as well.
#warriorsforkathryn
#endahc
AHCF works tirelessly to benefit patients and families. Thank you for all you do!
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Read moreAHCF has provided us with hope through their relentless research efforts. Being involved helps me feel like I am doing something in the face of a helpless and uncontrollable diagnosis.
Saludos terricolas. Solo contarles que junto con la plandemia (gran guion, bravo), payasadas de "fundaciones" han surgido tanto como cepas y variantes jajaja. Y, me parece extraño que, en este momento actual, no paren de hablar de su Rara peste...no se diga nada del Covid 19 en su pagina...se les olvido que el mundo esta siendo atacado, aniquilado por un virus infernal?. Y...su evento de Golf...tendre que llevar mascarilla y estar vacunado?. Jajajajajajja.
Saben que les pasa a los Genocidas e Infanticidas como Uds ?. Yo no lo se...sera primera vez que ire de cazeria y le saque la piel a uno, vivo obviamente.
Fundacion "matemos inocentes". Jijiji
Y, les pido de favor que ayuden a mi fundacion "Abiquila un Genocida" jujjuj
I’ve been so encouraged by the work of this group and the advocacy they provide for these sweet children affected by this unimaginably rare disorder, and I know the organization has been incredibly helpful and supportive to our friends and their daughter diagnosed with it.
As a friend of a family with a precious AHC child, I believe that this organization is doing incredible work. AHC is an unimaginably horrible disease, and the work that AHCF has done, and continues to do, to raise money for a cure provides life-giving hope for families of children with AHC. Imagining a cure for Estella that would take away her pain and suffering from AHC brings me to tears.
ACHF is a wonderful organization! My precious granddaughter Estella has AHC. It is so nice to know that you folks can help them with information and ideas and are there to encourage them in this difficult journey.
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AHCF has proven to be an invaluable resource for our daughter and son-in-law as they cope with our granddaughters AHC. Being such a rare disease, family doctors were at a loss for treatment. AHCF makes it possible for our family to access valuable information, connect with medical experts and network with other families dealing with this rare disease.
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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.
This foundation works tirelessly to End AHC and has been a wonderful resource for my niece who has AHC. Organized and operated by people who care deeply about curing AHC, this is an invaluable resource for those families affected by this horrible disease.
AHCF has given me the opportunity to serve for a cause on behalf of my daughter. This organization is leading the way in finding a cure that will help not only AHC kids, but potentially many others with mono genetic diseases.
AHCF works tirelessly to raise funds for cutting edge research, provide support to families, and spread awareness in order to end AHC.
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.
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!!
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!
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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!
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.
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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.
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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 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
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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!
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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
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!
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.
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.
This organization works day and night to better the lives of those suffering from AHC. Our community grows each year because of the outreach done by everyone of the all volunteer staff and board members.
This is a truly amazing organization. For a group that represents such a small population they do so much great work. Directing the fundraising and research has achieved the discovery of the gene that causes this rare neurological disorder. This discovery would not have happened if not for their leadership.
This organization always keeps me up to date with the process of finding a cure for Alternating Hemiplegia, in which my child suffers from if I need any information they are their to quickly get the information I need for my child Doctor
My best friend's daughter was diagnosed with AHC three years ago. It seemed as though her diagnosis took a long time after many doctors visits. The pediatricians had a difficult time diagnosing this rare disease. AHCF helped my friend's daughter and her family with information, emotional support, and hope for her future through research for a cure. I'm very grateful AHCF has been such a wonderful resource for this sweet little child and her family.
Alternating Hemiplegia of Childhood Foundation (AHCF) is an amazing organization! Our daughter was diagnosed in 2012 with AHC and we are so thankful that AHCF has been able to help us every step of the way. When your child has a rare disease, often pediatricians don't have enough experience to guide patients. AHCF does a tremendous job with patient and family support, as well as supporting researchers. They do so many fundraisers and direct SO much money back directly to the specialists who have active, ongoing research. It is encouraging to know that people are fighting for our kids.
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AHCF is an amazing organization; they are a quality foundation run mostly by volunteers. They are 100% committed to all AHC kids and to funding valuable research. It is a testament to their commitment to end AHC-a majority of funds raised go directly to research. In addition to being on the leading edge of research, they are invaluable to AHC families! They have a long history of providing answers and help to families who often had no where else to turn.
AHCF does wonders for the children afflicted with this disorder and their loving families as they navigate the uncharted waters of AHC.
My son who is now almost 25 was diagnosed with AHC at age 6.5. He also has a life threatening seizure disorder. It was a long process of seeing Dr. after Dr. and it had never even been heard of where I live. This foundation was very helpful in supporting us with useful information that helped both us and our Drs. It was great having someone you could talk too and they understood what you were going thru as they were also having similar experiences with their child.My son has been very stable since 1998 and hasn't had a major seizure since then. His episodes of paralysis are infrequent and totally unpredictable. He still walks but his balance is getting increasingly worse and he has very little stamina so uses a wheelchair for walks and outings. Communication is a major problem for him but he has come a long way. He is happy, has a great sense of humor. Please support this organization. We really need this research to help our children.
My daughter was diagnosed with AHC in October of 2013 at nine months old. A quick google search led me to the foundation. They are understanding and supportive of the children and their families. The fundraising efforts are amazing and with more recognition this group will be unstoppable. Meeting others at the family conference earlier this year was so helpful in understanding this diagnosis and the foundation made that possible. Madelyn's mom, Mt Pleasant SC.
My brother is diagnosed AHC. The most important problem is awareness. There are a lot of disorders waiting to be cured but this one isn't known by people. We should inform the society for diagnosing and curing the disease. Nothing is impossible. Poissiblities are boundaires in our minds. We can cure it. It's just a matter of information.
Our daughter recently got diagnosed at nearly 7 years old and the AHC foundation provides up with a great network of families as well as the most current information about AHC. We have a lot to learn and we rely on this support network to help us along.
Payne/Parrill
AHC is a very rare neurological disorder that needs money for research and without the AHCF getting money from private fundraisers the AHC patients and their families wouldn't know about the gene mutation that causes AHC to occur in patients.
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Read moreMy daughter Lisa is 13 and has AHC and I am on the fundraising committee. The foundation does great work in striving to help find a treatment and cure to help all the children affected with AHC. The foundation has also set up support groups and is always looking for ways to help the children and families affected with AHC. Please help support the foundation by either donating or spreading the word about the foundation and the disease which affects our children.
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I am a parent and a volunteer on the fundraising committee. My daughter Lisa is 13 years old and was diagnosed at 2 years old after a year of seeing many doctors. And through the the foundation they are constantly updating parents and doctors on progress and research projects going on. We are constantly trying to raise money for much needed research and raise awareness so those in the medical industry are aware of this horrible disorder which affects only 300 known cases in the USA and app 800 world wide. I am so grateful for the foundation and there efforts to find a cure and I have the confidence some day in the near future a cure will be found.
My grandson, Zachary, is now eleven years old. He was diagnosed with AHC before the age of one. I am so proud of how my daughter, son-in-law and his four siblings care for him. Zachary keeps going even when his body won't work correctly. It was a relief to know that the money raised for AHC research showed that Zachary's condition is not hereditary. My thanks go to all of the families who have fund raisers to continue research for this rare disease.
Our granddaughter was diagnosed with Alternating Hemiplegia of Childhood when she was 10 months old (1991). Very little was known about AHC then and the information available was difficult to find. This prompted our daughter and other parents to form the Alternating Hemiplegia of Childhood Foundation (AHCF).
It has been an eye opener to observe what it takes to get a foundation up and running. The continued passionate commitment and dedication of parents, families, friends, physicians, volunteers over these past 20 years is so very inspiring. And the results have been monumental.
Thank you AHCF. Keep up the good work !!!
During infancy, our son displayed abnormal posturing, constant irregular eye movements, and hemiplegia that progressed into frequent attacks of full body paralysis lasting for days at a time. As months passed, he was frequently misdiagnosed and received numerous tests that all came out normative. It took over two years to get a definitive diagnosis for our son and by the time he was finally diagnosed, our parenting had been in question and we felt defeated.
The day we heard he had AHC was bittersweet. For once, we had a medical professional that believed us and knew what was going on with him. At the same time, we were told that due to the rarity of the disease, only one treatment option was available and there would be no guarantee it would be effective at all. The relief of identifying the problem was overshadowed by many more scary and unanswered questions.
It wasn't until we came in contact with the AHCF that the feelings of loneliness and hopelessness slowly started to fade. We were able to have a support system of individuals who knew exactly what we were going through. Without them we wouldn't have had the opportunity for genetic testing that finally identified the mutation causing our son's disorder or known the treatment options available to our family.
The volunteers and individuals that make this foundation are amazing. They are proactive at increasing education and awareness, offer support, and truly care about all the children affected with the disease.
We spent the first 10 months of my daughter's life in and out of hospitals and emergency rooms. No one could explain the mysterious and frightening eye movements, loss of one side of her body and even losing the ability to hold her head up and swallow. She was treated for acid reflux for 10 months. We were ordering formula through a pharmacy at $40 a can, taking prevacid and Zantac but these episodes continued. A couple of EEGs and MRIs showed no seizure activity. As a mother, I knew something was wrong. My daughter was diagnosed with AHC in December 2012. We were scared, relieved, and confused. Doctors told us there was no real treatment and only about 300 cases in the US. We should contact AHC foundation for help. This foundation was all we had for support and answers. Everyone involved with this foundation bas been so helpful and all are dedicated to find a treatment and hopefully a cure. I've met and spoke to other moms who know exactly what I've been through and can share my pain and frustrations. Our kids with AHC are one in a millon and so is this foundation!!! With a little recognition and extra support this foundation would be unstoppable!
AHCF is the most dedicated group of parents I have ever had the pleasure of associating with. From the first phone call 11 years ago to now President of AHCF Lynn Egan, when my daughter Lisa Marie was first diagnosed to today, they have always been there to support, answer our questions and or find someone who can, or just listen as we cry over how devastating this disorder is.They are non stoppable in their quest to find the resources we so desperately need to find a cure for this rare and debilitating disorder. I Thank You all!
I am the current president of the AHCF and I have been involved for over 20 years. My daughter was diagnosed in 1991 at 10 months before there was a foundation. It was another year before I spoke to a parent who understood. The foundation provides a wealth of knowledge through it’s website, literature and conferences. The foundation supports families worldwide, assists in connecting families with other families and physicians in their area, raises awareness, and raises funds for research. I will continue to work with AHCF until there is a treatment and ultimately a cure for AHC.
My Granddaughter, Melody, was diagnosed with AHC at 18 months (Sep 2012).
She has had some issues with muscular contractions / stiffening / limp in her arms, legs, eyes, and mouth since birth, but nothing that anyone could document well or even diagnose. One doctor told us that she had a lazy eye and not to worry about it.
At six months she had a full body episode (she had no head control, she was unable to move her arms and legs like she was supposed to and was having difficulty swallowing due to her tongue pushing food back out like a newborn) and this was a child that had been trying to crawl just the night before. Her hospital stay was one week and EEG, MRI's etc. gave no answers. She "snapped" out of it and she was sent home with anti-seizure medication. On this medication she had more episodes and while they were not as drastic as the full body episode, she still would lose control of an arm or leg or both which was very frustrating for her as she was determined to be "normal". We took her off the medication and while the episodes didn't quit they became less frequent and were minor.
During this time we searched the internet for something that could point us in the right direction as the Doctors were as baffled as we were. We found many things that didn't quite fit and the doctors ruled them all out.
At twelve months she had another major episode like the one at six months. Again, no answers despite massive testing.
At this point I must say that her neurologist was WONDERFUL and continued to do research trying to figure out what was wrong with Melody.
When she had another major episode at 18 months, her neurologist again walked us through all the symptoms and asked numerous questions about her minor episodes as well. It was then that she was able to diagnose Melody with AHC.
It was wonderful to finally have a name and the beginnings of an understanding of this genetic condition, but the find out that there was no cure and not much research was disheartening. Sometimes it's not so great to be a "One in a Million Kid".
Further research brought us to the AHC Foundation where there was a wealth of information and better yet, we discovered other families who were going through what we were. We weren't alone in this!
Melody is now 27 months old and while she had another major episode a few weeks ago. We are able to handle it so much better because we now know what we are dealing with.
We have spread the word about AHC to all our friends and relatives and hope to continue educating people about this condition and help raise money for further research and perhaps someday, a cure!
We would still be in the dark about this condition if it weren't for the AHC Foundation. Keep up the great work!
This is an organization working to support families suffering from a severe disease which because of its rarity has not had much support otherwise. The organization also aims to support research in the field to help conquer the disease. I have been with them since the organization was founded in the early 90's and have been thrilled to see them grow in their activities and impact.
I am extremely impressed with the passion and dedication of the board members of this foundation, and with the care they take to be a well-organized and smoothly-running small nonprofit. They have funded critical research for this rare disorder, research that may not have otherwise been possible, and which has already led to a major advance in our understanding of the genetics of this condition. I expect that they will fund future research providing the best chance for more effective treatments, or someday a cure, for AHC. I attended portions of the family meeting in San Franscisco in June 2012, and was struck by how well the presentations and services seemed to match the needs of the families attending. I am very excited to be part of the medical advisory board of the AHCF.
My niece has AHC. I flew to San Francisco (from Boise, Idaho) to help w/ AHC Annual Convention in June 2012. Any help/volunteering/donating of funds is ALWAYS greatly appreciated as this is a very rare condition.
My son is 19 years old and has ahc. We have been in this fight alone until we found ahc foundation. It is wonderful to be able to talk to when days are hard and ask all the stupid questions which other sometimes laugh or just looked puzzled. We have become more and more involved and would like to have the world know who we are and help with our cause!!! Jenny Renfroe in Roswell, ga
Great parent support and very informative. Also provided us with medicine when we ran out. There hasn't been a time when i reached to them for something and have not been responded to in an absolutely positive and helpful way.
AHC is very rare and difficult to diagnose. Families often feel lost and concerned once their kids get diagnosed. AHCF offers support and education to families and patients in a very professional yet friendly way.
I have been personally involved with the Alternating Hemiplegia of Childhood Foundation Inc. (AHCF) for many years as an active AHC research member with the University of Utah under the guidance of Dr. Kathryn J. Swoboda. AHCF is a small foundation made up of dedicated and committed AHC parents of affected children with this disorder and through their time and dedication with the foundation these parents have brought the AHC world together in the USA and internationally. As a result of the many years of supporting research focused on finding the cause for this disease, we now have a gene responsible for this disorder. AHC affected families rely heavily on AHCF as a source of support and for the latest research updates.
The AHC foundation has provided my family hope and guidance in dealing with my daughter's rare disorder and all the associated issues. The support and knowledge of the foundation is incredible.
My grandson was diagnosed with AHC at age 1. We were encompassed by feelings of sadness, concern and fear of the unknown. AHC has provided us with the knowledge, resources and most importantly, a community of people who truly understand.
I'm the Medical Liaison and Coordinator for AHCF. i started volunteering for the Foundation in 2003. At the time there were limited resources and information for the families and professionals. We have grown into an active and focused Foundation and have made a concerted effort to raise money to move research forward and recently have found the first gene responsible for the disorder. This affects 70% of the patients, so we are even more determined to find the remaining genes and also research treatments for those affected. At the same time we have increased AHC awareness and education of families, professionals and the public through our website, conferences, literature and outreach efforts. I'm proud to be part of such a passionate and supportive organization.
It took 9 years before our child was diagnosised wit AHC, we were handed a sheet of paper and told "this is the information I have on this disorder" and the doctor sent us on our way. We reached out to the ACH Foundation who quickly embraced us as part of the family and shared resources that we in turn have shared with our doctors. Dealing with a rare disorder means that the majority of Doctors have no exposure and as a client we are tasked with finding out as much as possible. The AHC foundation has been ground force for us as a family while we learn and deal with our daughter's AHC. Everyone in the Foundation is passionate and willing to help at anytime.
I have worked with a number of foundations in coordinating academic research support. I have found the AHC Foundation to be committed to supporting research, very thoughtful in how they spend the funds they receive from donors, very engaged in the research they support, and their board members are a pleasure to work with. They do an excellent job of providing both personal support to families and children and bigger picture support to the longer term goals of improving diagnosis and treatment for those with Alternating Hemiplegia of Childhood.
The AHC Foundation is a great resource for both professionals in the medical field and families who have a child with this condition. They are a compassionate group of people who work very hard for this community. They help connect families to one another as well as to researchers and physicians who are active in the community. For a small foundation they have continue to make a large impact.
This small foundation has been one of the most effective of its kind in bringing together families in the U.S and partnering with its sister organizations worldwide to promote research and improved clinical care for children and adults with alternating hemiplegia of childhood (AHC). In December 2010, they won a Pepsi Refresh award, which provided the necessary funding to finally find the gene causing this disorder, after a dedicated effort spanning more than 15 yrs. This organization is one to watch. Big in heart, though small in overall dollars, they are a force to be reckoned with.
My child was diagnosed with this rare condition at age two. We were told there is little to no information about AHC and no cure. We were told our best bet was to contact this family organization, which we did. They helped us on our long and ever-changing, ever confusing journey navigating this condition that effects all aspects of our child's day and our family's day. Eleven yars later after many drs with differing diagnoses, the research recently completed thanks to financial support from this group, gave us the first confirmation that this is in fact the condition effecting our child. This group is truly helping our family.