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  • Tue. Sep 26th, 2023
Alternating Hemiplegia of Childhood – UK
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Blog Posts

AHC Research Parents & Medical Professionals

Understanding sleep in AHC and how you can get involved – Dr. Simona Balestrini

Aug 7, 2023 A BEHL 0 Comments
AHC Research Awareness Parents & Medical Professionals

Prof Sanjay Sisodiya speaks to Torie Robinson (Epilepsy Sparks) about Climate Change & Epilepsy

Nov 20, 2022 A BEHL 0 Comments
Awareness Pictures

Conference Gallery (Day 3)

Nov 6, 2022 A BEHL 0 Comments
Awareness Pictures

Conference Gallery (Day 2)

Nov 6, 2022 A BEHL 0 Comments
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Welcome to our February '2023 AHC UK Newsletter. U Welcome to our February '2023 AHC UK Newsletter. Updating important new happenings at AHC UK and ways to connect. Have a read and leave your comments - AHC UK Newsletter Feb '23
"Give 10 to that 1 in a million! Eleven years ago "Give 10 to that 1 in a million! Eleven years ago, a genetic abnormality was found that could explain 90% of AHC cases. From this moment on, scientists, families and clinicians started working closely together to find a cure for this incredibly rare and complex neurological disorder, which affects 1 in a million people worldwide. All this research takes money, a lot of money, and 10+ years is a very long time in the life of an AHC family. To close 2022 and mark the first decade since this important discovery, we are asking for anyone who can to donate 10 EUR; 10 EUR towards research, 10 years towards the hope that in 10 years' time, our children can lead happy and healthy lives without having to worry about the #humantimebomb. Help us fund projects that will lead to effective treatment and put an end to AHC. Give 10 for that 1 in a million! https://www.ahcuk.org/make-a-donation/ #AHCawareness #1inamillion
It's tomorrow the 18th of January 2023 Internation It's tomorrow the 18th of January 2023 International AHC Day #InternationalAHCDay #rarediseases Follow our hashtag #AHCAwareness #1inamillion
Living with AHC "It's difficult to describe what Living with AHC "It's difficult to describe what it is like to live with AHC to anyone outside the AHC community. What may seem like an ordinary activity, can be the trigger for an AHC episode or seizure and a day can start off ok and may end up in a life-threatening attack. Over the next few days, you'll get a tiny glimpse of what it's like through stories about how AHC families celebrate birthdays. 🎂🎉🥳🎁🎈 #1inamillion #ahcawareness #raredisease
What is AHC? #1inamillion #ahcawareness What is AHC? #1inamillion #ahcawareness
AHC Birthday Stories No 1: I like parties so much AHC Birthday Stories No 1: I like parties so much...NO! My name is Annabel Bollen, I am 32 years old and I am an AHC kid. At this moment, together with my mother Jeanine, I am sitting behind the laptop to “write” what I think of birthdays. Well, mom types and I dictate, because I can't write. Whenever it's my birthday I have a severe attack of AHC or an epileptic attack. I really dislike the parties, the crowds and the tension. It makes me very tired. I feel the attack coming on in my head. And often I shout: "No hey... not now!". But I can't help it, I don't know what's going on in my brain either. That's why no birthdays and parties for me.... not even if they are announced to me long enough in advance or are on the pic of the calendar. My dad Wim recently gave a party celebrating his 65th birthday and then our friend Ineke took care of me all afternoon and evening and for the first time I was there. At the end of the party I had an epileptic fit, but…..what a victory: almost the whole party I was there! Usually, when it's my birthday I go on a holiday with mom and dad. Wonderfully quiet with the caravan or to a cottage at a holiday resort. Giving treats at my daytime activities centre “Stichting Zo” will come later. #ahcawareness #1inamillion
Day 2: (Theme: The Present). We had speakers (rese Day 2: (Theme: The Present). We had speakers (researchers/clinicians) speaking and presenting about topics such as sharing current research on the life course, clinical perspective, and key dilemmas for clinicians, researchers and families. Updates from laboratory research and the value of the multi-disciplinary teams in managing AHC & ATP1A3 diseases. The day ended with an evening of entertainment in the great hall (Royal College of Physicians of Edinburgh) with a bagpipe Scottish welcome, dinner, drinks, Elwin's moving song written for AHC Champions and ending with the traditional ceilidh (Scottish dancing). #10yearsatp1a3 #AHCAwareness #1inamillion #AHC #neurology
Day 1: 19th of October was the first day of the 10 Day 1: 19th of October was the first day of the 10-year AHC & ATP1A3 diseases symposium. Great to see international associations, researchers, delegates and families joining the conference. #10YearsATP1A3 #AHCAwareness #1inamillion #AHC #neurology
Get ready for our unique three-day hybrid event ne Get ready for our unique three-day hybrid event next October and don't miss these important dates! June 8th: Bookings open for families! July 31st: Last day to catch the early-bird registration fee August 31st: Deadline for submission of posters & oral presentations. Abstract should be limited to 300 words & must be submitted to support@ahcuk.org September 30th: Last day to book your table for the formal dinner and Scottish welcome! October 19th - 21st: See you in Edinburgh or online! #10yearsATP1A3 #ahcawareness #research #conference #science #families #1inamillion #edinburgh #scotland #bookings #importantdates
🔹Do you want to connect with the international 🔹Do you want to connect with the international AHC and ATP1A3 community? 🔹Are you interested in learning more about current research and future plans in AHC and ATP1A3? 🔹Would you like to have a chance to share your thoughts on future research? 📌Then join us in Edinburgh or online from 19 to 21 October 2022 for a three-day unique hybrid event incorporating: a 10-year anniversary conference to recognise the discovery of the ATP1A3 gene for AHC and ATP1A3 diseases, and the 10th Symposium on ATP1A3 in disease. 📅 More information will follow over the next few days. #10yearsATP1A3 #ahcawareness #research #conference #science #families #1inamillion
Imagine a gender-equal world. A world is free of b Imagine a gender-equal world. A world is free of bias, stereotypes and discrimination. A world that's diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women's equality. Collectively we can all #BreakTheBias. Celebrate women's achievements. Raise awareness against bias. Take action for equality. Today the 8th of March 2022 on International Women's Day we stand and salute all the women involved with an AHC Champions' life. It may be the champion's grandmother, their mother, their sister and all their aunts. Thank you ladies for being that support and this is your day. #AHCAwareness #1inaMillion #InternationalWomensDay
72% of rare diseases are genetic, including AHC. I 72% of rare diseases are genetic, including AHC. In approximately 80% of cases, AHC is caused by a mutation in the ATP1A3 gene. The discovery of the ATP1A3 as a main cause of AHC was made only a decade ago and has since spurred on research into understanding this rare disorder. Over 100 AHC-causing mutations have been discovered in the ATP1A3 gene. Some mutations occur more frequently than others. Twenty percent of AHC patients do not have a mutation in the ATP1A3 gene; leading experts to believe more genes are yet to be discovered to explain this condition. #ahcawareness #1inamillion #rarediseaseday
Today is International Rare Disease Day 2022 Why Today is International Rare Disease Day 2022 Why don’t you enjoy today with a ‘Rare Treat’. Can you donate the cost of Coffee & Cake for all the AHC Rare Disease Champions? All donations will go to continue a valuable AHC research project in the UK (‘AHC and ATP1A3 diseases Natural History Study’) that needs urgent funding to continue. To donate £3 for the cost of a coffee or £5 for coffee and cake please follow our donation link https://buff.ly/3JZBdXl #AHCAwareness #1inaMillion #RareDiseaseDay
28th of Feb 2022 is Rare Disease Day. Alternating 28th of Feb 2022 is Rare Disease Day. Alternating Hemiplegia of Childhood or AHC is a 1 in a million #1inaMillion medical condition and today we celebrate the day by having a rare coffee and cake contribution to AHC Research. Donate on the link below: #AHCawareness https://youngepilepsy.beaconforms.com/form/fc94ad3b
Our AHC UK Champions #1inaMillion #AHCAwareness #r Our AHC UK Champions #1inaMillion #AHCAwareness #raredisease and thank you, everyone, for making our week so special.
AHC is known as a rare complex epilepsy. Most heal AHC is known as a rare complex epilepsy. Most healthcare professionals will never have seen a person with AHC. It is important to increase awareness of AHC and information leaflets for healthcare professionals and patients/carers. These leaflets with EpiCARE were recently co-written by AHC parents and experts. More info: https://buff.ly/3qLlbJT #1inamillion #ahcawareness #raredisease
Research has shown that sleep apnoea is one breath Research has shown that sleep apnoea is one breathing issue in AHC. However, families report many other breathing issues & complications. More research is needed to better understand the range of breathing complications, & causes, with AHC #1inamillion #ahcawareness #raredisease
Research has shown that AHC can affect other areas Research has shown that AHC can affect other areas of the body other than neurology. Research shows that the ATP1A3 gene is expressed in the heart also & that cardiology review is important for people with AHC. Link https://buff.ly/3qTJ9mp #1inamillion #ahcawareness #raredisease
We are grateful to @IAHCRC for this helpful timeli We are grateful to @IAHCRC for this helpful timeline highlighting the research before & after the ATP1A3 gene discovery. It is amazing what the AHC community of families, friends & supporters have achieved on meagre amounts of research funding. Thank you to everyone who continues to support our fight for treatment to END AHC #1inamillion #ahcawareness #raredisease
10 years ago a collaboration of international rese 10 years ago a collaboration of international researchers and families resulted in a genetic breakthrough and the discovery that the ATP1A3 gene was the cause of AHC in approx. 80% of cases. Before that, it was not known what caused AHC. This is the ground-breaking scientific paper that was a result of this collaboration. Link to article: https://buff.ly/3Af3zJw #1inamillion #ahcawareness #raredisease
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Blog Posts
  • Understanding sleep in AHC and how you can get involved – Dr. Simona Balestrini
  • Prof Sanjay Sisodiya speaks to Torie Robinson (Epilepsy Sparks) about Climate Change & Epilepsy
  • Conference Gallery (Day 3)
  • Conference Gallery (Day 2)
  • Conference Gallery (Day 1)
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