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2017 Top-Rated Nonprofit

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

86 Stories from Volunteers, Donors & Supporters

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!

2

Volunteer

Rating: 5

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.

10

Volunteer

Rating: 5

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!

3

Client Served

Rating: 5

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.

3

Donor

Rating: 5

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.

3

Donor

Rating: 5

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.

3

Client Served

Rating: 5

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!

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