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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

10 Stories from Volunteers, Donors & Supporters

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 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.

2 Shannon104

Volunteer

Rating: 5

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

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

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

Volunteer

Rating: 5

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.

2 Leslie27

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.