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.
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!
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.
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.
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.
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!
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.
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.
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.
This foundation provides immense value to families of children affected by AHC.
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
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.
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.
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.
A wonderful organization helping children with this terrible disease.
AHCF does wonders for the children afflicted with this disorder and their loving families as they navigate the uncharted waters of AHC.
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.
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.
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.
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.
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.
The AHC Kids Foundation needs your money to find a cure or at least a treatment.
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.
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.
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.
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 !!!
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.
We spent the first 10 months of my daughter's life in and out of hospitals and emergency rooms. No one could explain the mysterious and frightening eye movements, loss of one side of her body and even losing the ability to hold her head up and swallow. She was treated for acid reflux for 10 months. We were ordering formula through a pharmacy at $40 a can, taking prevacid and Zantac but these episodes continued. A couple of EEGs and MRIs showed no seizure activity. As a mother, I knew something was wrong. My daughter was diagnosed with AHC in December 2012. We were scared, relieved, and confused. Doctors told us there was no real treatment and only about 300 cases in the US. We should contact AHC foundation for help. This foundation was all we had for support and answers. Everyone involved with this foundation bas been so helpful and all are dedicated to find a treatment and hopefully a cure. I've met and spoke to other moms who know exactly what I've been through and can share my pain and frustrations. Our kids with AHC are one in a millon and so is this foundation!!! With a little recognition and extra support this foundation would be unstoppable!
My 22 year old son has AHC. This foundation has supportive to us since he was properly diagnosed at age 6. They have helped through offering advice and assistance. The people are awesome!!! We ask everyone to donate to this worthy cause.
AHCF is the most dedicated group of parents I have ever had the pleasure of associating with. From the first phone call 11 years ago to now President of AHCF Lynn Egan, when my daughter Lisa Marie was first diagnosed to today, they have always been there to support, answer our questions and or find someone who can, or just listen as we cry over how devastating this disorder is.They are non stoppable in their quest to find the resources we so desperately need to find a cure for this rare and debilitating disorder. I Thank You all!
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.
My Granddaughter, Melody, was diagnosed with AHC at 18 months (Sep 2012).
She has had some issues with muscular contractions / stiffening / limp in her arms, legs, eyes, and mouth since birth, but nothing that anyone could document well or even diagnose. One doctor told us that she had a lazy eye and not to worry about it.
At six months she had a full body episode (she had no head control, she was unable to move her arms and legs like she was supposed to and was having difficulty swallowing due to her tongue pushing food back out like a newborn) and this was a child that had been trying to crawl just the night before. Her hospital stay was one week and EEG, MRI's etc. gave no answers. She "snapped" out of it and she was sent home with anti-seizure medication. On this medication she had more episodes and while they were not as drastic as the full body episode, she still would lose control of an arm or leg or both which was very frustrating for her as she was determined to be "normal". We took her off the medication and while the episodes didn't quit they became less frequent and were minor.
During this time we searched the internet for something that could point us in the right direction as the Doctors were as baffled as we were. We found many things that didn't quite fit and the doctors ruled them all out.
At twelve months she had another major episode like the one at six months. Again, no answers despite massive testing.
At this point I must say that her neurologist was WONDERFUL and continued to do research trying to figure out what was wrong with Melody.
When she had another major episode at 18 months, her neurologist again walked us through all the symptoms and asked numerous questions about her minor episodes as well. It was then that she was able to diagnose Melody with AHC.
It was wonderful to finally have a name and the beginnings of an understanding of this genetic condition, but the find out that there was no cure and not much research was disheartening. Sometimes it's not so great to be a "One in a Million Kid".
Further research brought us to the AHC Foundation where there was a wealth of information and better yet, we discovered other families who were going through what we were. We weren't alone in this!
Melody is now 27 months old and while she had another major episode a few weeks ago. We are able to handle it so much better because we now know what we are dealing with.
We have spread the word about AHC to all our friends and relatives and hope to continue educating people about this condition and help raise money for further research and perhaps someday, a cure!
We would still be in the dark about this condition if it weren't for the AHC Foundation. Keep up the great work!
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.
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.
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.
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.
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
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.
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.
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.