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