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SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference AHC Federation of Europe (AHCFE) Ukraine Statement Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet Newsletter January 2022 Fundraising: Medical Team raise funds by wearing Christmas Jumpers for AHC UK
Awareness Parents & Medical Professionals

SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference

May 29, 2022 A BEHL
In the News

AHC Federation of Europe (AHCFE) Ukraine Statement

Mar 14, 2022 A BEHL
AHC Research Parents & Medical Professionals

Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet

Mar 13, 2022 A BEHL
AHC Research Awareness Fundraising Newsletters

Newsletter January 2022

Jan 10, 2022 A BEHL
Fundraising

Fundraising: Medical Team raise funds by wearing Christmas Jumpers for AHC UK

Jan 4, 2022 A BEHL
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  • SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference
    Awareness Parents & Medical Professionals
    SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference
  • AHC Federation of Europe (AHCFE) Ukraine Statement
    In the News
    AHC Federation of Europe (AHCFE) Ukraine Statement
  • Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet
    AHC Research Parents & Medical Professionals
    Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet
  • Newsletter January 2022
    AHC Research Awareness Fundraising Newsletters
    Newsletter January 2022
  • Samuel Runs for our AHC Champions: This is his Running Blog
    Awareness Fundraising
    Samuel Runs for our AHC Champions: This is his Running Blog
  • [The Scottish Sun] TOT’S AGONY Scots baby girl suffers one-in-a-million ‘human timebomb’ condition which causes terrifying stroke-like paralysis
    In the News
    [The Scottish Sun] TOT’S AGONY Scots baby girl suffers one-in-a-million ‘human timebomb’ condition which causes terrifying stroke-like paralysis
  • [BBC News] My one-in-a-million daughter is a ‘human timebomb’
    In the News
    [BBC News] My one-in-a-million daughter is a ‘human timebomb’
  • AHC Research
    Transcranial magnetic stimulation as a tool to understand genetic conditions associated with epilepsy
  • SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference
    Awareness Parents & Medical Professionals
    SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference
  • AHC Federation of Europe (AHCFE) Ukraine Statement
    In the News
    AHC Federation of Europe (AHCFE) Ukraine Statement
  • Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet
    AHC Research Parents & Medical Professionals
    Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet
  • Newsletter January 2022
    AHC Research Awareness Fundraising Newsletters
    Newsletter January 2022
Awareness Parents & Medical Professionals

SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference

May 29, 2022 A BEHL

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…

In the News

AHC Federation of Europe (AHCFE) Ukraine Statement

Mar 14, 2022 A BEHL

AHC UK is a member of the AHC Federation of Europe (AHCFE) and we attach a statement from the federation about AHC families in Ukraine. Our hearts go out to…

AHC Research Parents & Medical Professionals

Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet

Mar 13, 2022 A BEHL

The news of the publication of the leaflet and patient journey for AHC has been included in the newsletter of EpiCARE-ERN, the European Reference Network for Rare and Complex Epilepsies.…

AHC Research Awareness Fundraising Newsletters

Newsletter January 2022

Jan 10, 2022 A BEHL

Dear AHC families, researchers and supporters, As we come to the end of the first week of 2022, we hope you and your family have had a good Christmas and…

Fundraising

Fundraising: Medical Team raise funds by wearing Christmas Jumpers for AHC UK

Jan 4, 2022 A BEHL

The staff from Greencroft North Surgery, Annan, South West Scotland, enjoyed getting into the Christmas spirit by having a Christmas jumper day at work on Monday the 13th of December. …

Fundraising Parents & Medical Professionals

AHC UK: Call for New Committee Members

Sep 19, 2021 A BEHL

Are you passionate about improving life for those living with AHC? Would you like to be part of a growing charity which has this aim at its heart? The AHC…

AHC Research Newsletters

AHC UK Newsletter: Sept 2021

Sep 16, 2021 A BEHL

Attaching below is the PDF version of AHC UK’s Newsletter Sept 2021. The newsletter gives us updates on the coming virtual AHC UK Scientific Symposium held on the 17th of Sept…

AHC Research Fundraising

Andrea’s Long Covid Static Cycle for Anya & All AHC Champions

Aug 8, 2021 A BEHL

For the past 7 months, I have been one of the estimated 2 million people in the UK with Long Covid. It has prevented me from doing most of the…

AHC Research Parents & Medical Professionals

Revision of the Diagnostic Criteria of Alternating Hemiplegia of Childhood

May 8, 2021 A BEHL

EDITORIAL | ARTICLES IN PRESS Revision of the Diagnostic Criteria of Alternating Hemiplegia of Childhood Mohamad A. Mikati, Eleni Panagiotakaki, Alexis Arzimanoglou Published: May 03, 2021 DOI: https://doi.org/10.1016/j.ejpn.2021.05.004 Article Info:…

Awareness Fundraising Newsletters Parents & Medical Professionals

AHC UK Virtual Family Event’s on Sat 15th May 2021

May 4, 2021 A BEHL

AHC UK | Virtual Family Event | Registration Link: AHC UK VIRTUAL FAMILY MEETING SAT 15TH MAY 2021 at 0930AHC UK VIRTUAL PUB QUIZ FUNDRAISER SAT 15TH MAY 2021 at…

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10 yrs Symposium (19th – 21st Oct’22)

Sign up –  

  • As a Researcher / Clinician
  • As a Family Member:Email us at support@ahcuk.org for the dedicated family booking link (PLEASE NOTE: this is different to the research/clinician booking link)

    If you are an international patient, family member or friend your international patient organisation will be sharing the link with you or you are also welcome to email us as above and we can give it to you

Adam Ling
Adam Ling

Blog Posts

Awareness Parents & Medical Professionals

SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference

May 29, 2022 A BEHL
In the News

AHC Federation of Europe (AHCFE) Ukraine Statement

Mar 14, 2022 A BEHL
AHC Research Parents & Medical Professionals

Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet

Mar 13, 2022 A BEHL
AHC Research Awareness Fundraising Newsletters

Newsletter January 2022

Jan 10, 2022 A BEHL
Get in touch with us
Blog Posts
  • SAVE the DATE (19th to 21st of Oct 2022): 10 years Anniversary Conference
  • AHC Federation of Europe (AHCFE) Ukraine Statement
  • Alternating Hemiplegia of Childhood (AHC) Patient Journey Leaflet
  • Newsletter January 2022
  • Fundraising: Medical Team raise funds by wearing Christmas Jumpers for AHC UK
AHC UK Instagram

supportahcuk

supportahcuk
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
Today is AHC Research & Resources Day: we highlig Today is AHC Research &  Resources Day: we highlight the genetic breakthrough for AHC, key research that has taken place over the last 10 years & signpost you to helpful resources on AHC. #1inamillion #ahcawareness #RareDisease
"Living with a rare disease" Díana Júlíusdótti "Living with a rare disease" Díana Júlíusdóttir's photographs that capture moments of the life of a family living with AHC are exhibited at the 6th Biennial of Fine Arts and Documentary Photography (now Barcelona Foto Biennale) at the FotoNostrum Gallery, Barcelona. Díana's photo was the winner of the 2021 EURORDIS Photography Prize (third place) and captures the suffering and anxiety of Sunna Valdís Sigurðardóttir as her parents do their best to calm and comfort her. #1inamillion #ahcawareness #raredisease #disability #livingwithAHC #accessibility #neurocondition #Neurology
2021 Finalist in #Raredisease Film Festival - vide 2021 Finalist in #Raredisease Film Festival - video of living with AHC "One in a million" https://buff.ly/3ruKmQ4  #1inamillion #ahcawareness
Prof Sanjay Sisodiya, Neurologist and AHC Expert, Prof Sanjay Sisodiya, Neurologist and AHC Expert, University College London, discusses what AHC is and what is known so far https://buff.ly/3rrdpDV  #1inamillion #ahcawareness #raredisease #RareEpilepsy #epilepsy #paralysis #childhood #dystonia #nystagmus #chronicillness #seizure #ataxia #picoftheday #igers #disabilityawareness #international #rarediseases #genetics #neurology
Don't miss the live Facebook podcast with Rosaria Don't miss the live Facebook podcast with Rosaria Vavassori (data manager & AHC mother) & Alexis Arzimanoglou (paediatric epileptologist & researcher) tonight at 6 pm GMT+1 on Epilepsy Sparks Insights with Torie Robinson @epilepsysparks
#1inamillion #ahcawareness #raredisease #RareEpilepsy #epilepsy #paralysis #childhood #dystonia #nystagmus #chronicillness #seizure #ataxia #1inamillion #ahcawareness #picoftheday #igers #disabilityawareness #international #rarediseases #genetics #neurology
Don't miss the live Facebook podcast with Rosaria Don't miss the live Facebook podcast with Rosaria Vavassori (data manager and AHC mother) and Alexis Arzimanoglou (paediatric epileptologist and researcher) tonight at 6pm GMT+1 on Epilepsy Sparks Insights with Torie Robinson @epilepsysparks

#1inamillion #ahcawareness #raredisease #RareEpilepsy #epilepsy #paralysis #childhood #dystonia #nystagmus #chronicillness #seizure #ataxia #picoftheday #igers #disabilityawareness #international #genetics #neurology
☝🏻 Raise your finger today for International ☝🏻 Raise your finger today for International AHC Day & help us raise awareness of this #1inamillion Share your photos today & throughout the week & look out for your entry in our giant collage at the end of this week. #rarediseases #ahcawareness #picoftheday #igers #disabilityawareness #international #rarediseases #RareDisease #genetics #neurology #accessible #neuro #instadisability #instagram
Today is International AHC Day! While the conditi Today is International AHC Day!

While the condition was first discovered approx. 40 years ago, 18 January 2012 marks the day of a scientific breakthrough for AHC: the discovery that a mutation in the ATP1A3 gene causes AHC for approximately 80% of cases. 

This week AHC patient organisations around the world are coming together to raise awareness of this ultra-rare condition, which affects #1inamillion people. 

Please join us by sharing, liking and commenting on our posts!
#ahcawareness #rarediseases #autism #neurology #disability #epilepsy #genetics
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