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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

91 Stories from Volunteers, Donors & Supporters

3 Paul178

Volunteer

Rating: 5

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.

3

General Member of the Public

Rating: 5

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.

2

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

This foundation provides immense value to families of children affected by AHC.

1 Sherrie Y.

Client Served

Rating: 5

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

3

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

I have only known about this great organization for a few years. But be assured that the Alternating Hemiplegia of Childhood Foundation (AHCF) does exactly what it claims to do…..help children with AHC and their families cope with the diagnosis, finding help amongst the AHCF community, raising awareness, and raising funds that almost entirely go toward research in finding a cure. I can’t say enough positive things about the people who serve the cause and work so hard to make life better for those afflicted with AHC. They give a priceless gift to those children and their families….the gift of hope.

Previous Stories
7

General Member of the Public

Rating: 5

Our granddaughter, Kathryn is now 3 1/2 years old and was diagnosed with AHC within the first year. It goes without saying that we love her completely, but what we didn't expect to feel was such admiration as we watch her cope with seizures and trouble getting her body to do what she wants. She battles through and keeps on going, expecting to do what her older brother does, and not asking for any special treatment. Her "can do" attitude comes directly from her parents who watch over her, love her, but allow her to explore the world around her and interact with it, not just watch it. All of us have benefited from the AHCF family and their untiring efforts to find a cure for AHC AND provide a network of information and caring people to support the kids and their families.

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.

2 Laura148

Client Served

Rating: 5

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.

Previous Stories
2

Client Served

Rating: 5

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.

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1 Bob_74

Donor

Rating: 5

A wonderful organization helping children with this terrible disease.

1

Donor

Rating: 5

AHCF does wonders for the children afflicted with this disorder and their loving families as they navigate the uncharted waters of AHC.

2

Client Served

Rating: 5

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.

2 Melissa208

Client Served

Rating: 5

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.

1 kafkasmurat

Volunteer

Rating: 5

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.

1

General Member of the Public

Rating: 4

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

2 Aziz L.

Client Served

Rating: 4

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.

Previous Stories
1

Client Served

Rating: 3

The AHC Kids Foundation needs your money to find a cure or at least a treatment.

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1

Volunteer

Rating: 5

My 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.

Previous Stories
2

Volunteer

Rating: 5

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.

2

Client Served

Rating: 5

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.

1

Donor

Rating: 5


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 !!!

1

Client Served

Rating: 5

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.