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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

86 Stories from Volunteers, Donors & Supporters

3

Board Member

Rating: 5

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.

2

Advisor

Rating: 5

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.

2

Client Served

Rating: 5

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.

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 Jenny31

Donor

Rating: 5

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

2

Client Served

Rating: 5

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.

2

Professional with expertise in this field

Rating: 5

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.

2

Professional with expertise in this field

Rating: 5

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.

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.

2

Client Served

Rating: 5

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.

2 Sharon53

Board Member

Rating: 5

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.

2 Kristine5

Client Served

Rating: 5

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.

3 Roxana L.

Client Served

Rating: 5

Would be lost without Ahc. Have been instrumental in providing knowledge of this rare disorder.

2 Rachel57

Professional with expertise in this field

Rating: 5

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.

2 Tara14

Professional with expertise in this field

Rating: 5

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.

4 Kathryn11

Professional with expertise in this field

Rating: 5

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.

4 Karen110

Client Served

Rating: 5

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.