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Alternating Hemiplegia of Childhood Foundation Inc

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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Specifically Named Diseases Research

Mission: Through research, education and family support, we have ONE MISSION: END AHC. Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.

Results: We have grown from a grass roots organization to a global foundation, helping families around the world with AHC. We have the largest database of AHC families in the world including a biobank and Red Cap database. We are recognized as the leader in AHC research and Family support and are always looking for ways to improve our presence and fulfill our mission.

Target demographics: All those diagnosed with Alternating Hemiplegia of Childhood

Direct beneficiaries per year: 1) AHC families by directing them to available resources, connecting them to experts in the field, and providing them with the most up to date information available regarding AHC research and advances for daily care of an AHC patient, 2) School and Health care professionals by educating them about AHC, 3) Researchers by providing over $250,000.00 in grants to move the research forward.

Geographic areas served: The United States

Programs: 1) Raise money for research to find a treatment and a cure, 2) Host a Biennial Family Meeting, 3) Educate the medical community and the public, 4) Spread awareness through social media, 5) Support families, 6) Maintain an interactive website for information and resources.

Community Stories

127 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

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

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Donor

Rating: 5

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.

Previous Stories

Donor

Rating: 5

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!

Client Served

Rating: 5

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.

Previous Stories

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

The AHCF is a priceless resource for parents battling this ultra-rare disease.

Previous Stories

Client Served

Rating: 5

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!

Stephen H.7

Board Member

Rating: 5

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.

katebyrne

Board Member

Rating: 5

The AHCF was an invaluable resource when we got our son's diagnosis. The information and support they provide for our family is unavailable anywhere else. The service they provide families comes at such a vulnerable time and they know exactly what's needed. We love this organization!

Katelyn W.2

Board Member

Rating: 5

AHCF works tirelessly to raise funds for cutting edge research, provide support to families, and spread awareness in order to end AHC.

Kendra Z.

Donor

Rating: 5

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.

corky825

Volunteer

Rating: 5

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.

Previous Stories

Volunteer

Rating: 5

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!

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General Member of the Public

Rating: 5

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.

Donor

Rating: 5

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.

General Member of the Public

Rating: 5

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!!

General Member of the Public

Rating: 5

This nonprofit is working for hope, treatment, and a cure for AHC kids. This rare disease needs research, funding, and a cure!

Britt9883

Client Served

Rating: 5

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!

Previous Stories

Client Served

Rating: 5

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!

Trisha S.2

Donor

Rating: 5

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!

Donor

Rating: 5

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!!

Beth Shropshire S.

Donor

Rating: 5

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! ❤️

Luke B.1

Donor

Rating: 5

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 :) !!

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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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2

General Member of the Public

Rating: 4

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.

Donor

Rating: 5

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.

Luann C.1

Donor

Rating: 5

A great organization that has come so far in such a short time. Proud of all the AHCH heroes and their family and friends.

Lawrence C.1

Donor

Rating: 5

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.

Cathleen Quinn C.

Board Member

Rating: 5

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!

Lauren G.3

Client Served

Rating: 5

This foundation continues to work diligently toward finding a cure for AHC. I am so grateful for everything this foundation does.

Volunteer

Rating: 5

The foundation is working tirelessly to support the AAV Research project which will hopefully result in a cure for this awful disease.

Client Served

Rating: 5

Excellent volunteers working toward a great cause!

General Member of the Public

Rating: 5

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.

Previous Stories

General Member of the Public

Rating: 5

AHCF is awesome! Love that their mission includes family support and education while researching AHC. Almost all of the money raised goes toward their mission!!!

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Jade Aliyan S.

Client Served

Rating: 5

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.

Marcia Anderson D.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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.

Donor

Rating: 5

The AHC Foundation is amazing! They are always looking for new ways to raise awareness and funding!

Volunteer

Rating: 5

Ahcf is an amazing foundation that always strives to find more funds to support research that is so needed.

Shannon104

Volunteer

Rating: 5

AHCF continuously strives to raise funds for research

Previous Stories
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Volunteer

Rating: 5

This foundation continues to put 100 percent effort in to raising money for research to end Alternating Hemiplegia of Childhood.

Board Member

Rating: 5

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.

Carol104

Board Member

Rating: 5

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!

Previous Stories

Board Member

Rating: 5

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!

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Donor

Rating: 5

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.

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

A great foundation set out to help find a cure for a debilitating rare disease.

General Member of the Public

Rating: 5

Fantastic charity organizations for research childhood disease. Helping families support each other for greater cause in same situation.

Donor

Rating: 5

Watching a friends daughter struggle with this disease is frightening at times. Her and others need help through donations!

Donor

Rating: 5

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!

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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

Client Served

Rating: 5

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.

2

Board Member

Rating: 5

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!

1

Donor

Rating: 5

Positive experience with this charity and I will continue to donate.

1

Donor

Rating: 5

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.

2

Client Served

Rating: 5

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.

Nicole167

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Tobe C.

Donor

Rating: 5

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.

Donor

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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.

1

Board Member

Rating: 5

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!