Category: Resources

12th Symposium on ATP1A3 in Disease (14 – 15 Nov 2024) Barcelona, Spain

12th Symposium on ATP1A3 in Disease

Welcome to the 12th Symposium on ATP1A3 in Disease, a scientific meeting that traces its roots back to the seminal discovery of the ATP1A3 mutations in Alternating Hemiplegia of Childhood (AHC).

The inaugural symposium in Brussels in 2012 marked the beginning of a profound scientific journey for the AHC and ATP1A3 community. It served as a pivotal moment where researchers, clinicians, patients, and advocates came together to embark on a collective quest to understand ATP1A3-related diseases. Since then, the symposium has become a beacon of collaboration, attracting diverse perspectives and expertise from around the world.

Join us on 14-15 November 2024, as we gather for the first time in Spain at the historic Espai Modernista Sant Pau in Barcelona. Against the backdrop of this vibrant city, we’ll continue to explore the complexities of ATP1A3, from gene mutations to potential treatments, in an atmosphere of collaboration and shared purpose.

From Rome to Tokyo, from Chicago to Barcelona, each meeting has added layers of insight and momentum to our collective efforts. As we prepare for this latest chapter, we look forward to welcoming you. Your involvement is crucial to our shared mission.

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Programme:

This will be a hybrid event discussing the progress in understanding the basic science, developments in translational science – from ongoing treatments, including gene-based and pharmacological and functional treatments, to clinical trials for mouse models and biomarkers – and what matters for families.

Here is a taster of the programme topics that will be covered during this two-day conference. The full programme schedule will be released in the coming weeks.

Barcelona ATP1A3 Symposium

 

To Register Click Here

More information can be found on the 12th Symposium on ATP1A3 in Disease website

14-15 November 2024, Barcelona. Spain 

Email: atp1a3.barcelona@aesha.org

AHCFE (Annual General Meeting) 3rd December 2024

Join our AHC Federation of Europe’s next Annual General Meeting (AGM).

Annual General Meeting Date:

3rd December 2024 (2100 – 2200 pm CET)

Link to the meeting –  (To be followed soon)

See you all.

Featured Image: Photo by Sincerely Media on Unsplash

 

AHC Song “One in a Million”

 

”One in a Million” AHC Song was written, sung and recorded by Elwin at the International AHC Symposium held in Edinburgh in October 2022.  Elwin is a board member of the Netherlands AHC Association and parent of AHC Champion Indy. This video is about his love for his daughter, and above all the insecurities and fears having and living with AHC entails.

Do leave a message or comment below and show your support

How to join Microsoft (MS) Teams for the AHCFE Annual General Meeting (AGM) 

How to join Microsoft (MS) Teams for the AHCFE Annual General Meeting (AGM) 

  1. Please use this link to join the Microsoft Teams meeting: https://tinyurl.com/4m96pcp5    
  2. Click on the link where it says ‘Click here to join the meeting’  
  3. You will then see this page below: 
  4. If you are already registered on Teams and have the application downloaded on your computer or smartphone if the Teams app doesn’t automatically start (it often will) then click ‘open your teams app’  
  5. If you haven’t used Teams before then we recommend you can select ‘continue on this browser’.  This will allow you to continue on this browser as a guest and you will not have to download the team’s app.   

The link will be live from 7.55 pm (Central European Time) on Saturday 5th November 2022 and the meeting starts at 8 pm CET.  

We look forward to seeing you on Saturday 5th November 2022 

AHC Federation of Europe Executive Committee   

AHCFE Ukraine Statement

AHCFE Ukraine Statement

Alternating Hemiplegia of Childhood Federation of Europe (AHCFE) is deeply saddened by the conflict in Ukraine.

Our thoughts are with all people of Ukraine, and we hope for a swift and peaceful end to this terrible situation.

We have been contacted by many AHC European groups concerned about any AHC families in Ukraine.  Through contacts, we have established there are two Ukrainian AHC families and we have been told they are currently safe.

We have offered to connect them with other AHC organisations and families in Europe should they need support.

© Clay Banks | Unsplash

Please leave a message or note of your support for the AHC Ukraine families. Thank you!

AHC Bulgaria joins AHCFE

A warm welcome to Alternating Hemiplegia of Childhood Bulgaria as AHCFE’s newest member.

3 Bulgarian children have been diagnosed with AHC to date and AHC Bulgaria was formed today

We are looking forward to work with Bulgaria in the quest for a CURE

AHC Bulgaria website will open soon http://www.ahcbg.org

AHC in 2017 – Looking back….

The year started with a bang because on International AHC day 18th of January 2017 we will launch a new website dedicated to the documentary Human Timebombs The full film was made available in 10 languages on the site http://www.humantimebombs.com

It is our hope that by making Human Timebombs public the film will help families all over the world get more understanding from people in their community. We also hope that more children will get diagnoses because of the film and that we get more doctors and researchers interested in helping the AHC community find a treatment for this important disorder.

For the families however not much happened to make their life easier in 2017, no new treatments and no discoveries that make them hopeful that they will see a cure in the near future.
We cannot stop fighting though because if we do there will of course never be a treatment for our kids.
We will have to do better, push harder, get more funds and raise awareness so that people will understand how important AHC is, not just for us parents that live and breath this disorder every day but for the world.
The world has to understand the this disorder is the key to finding treatments for many more neurological conditions that will in the end help millions of people all over the world.

Let´s make 2018 OUR year and find a treatment that will improve quality of life for our AHC families.

HAPPY NEW YEAR

 

Sigurdur Holmar Johannesson
President
AHC Federation of Europe

http://www.ahcfe.eu

Here is a shortlist of what happened in 2017 for AHC, apart from these publications and events lots of fundraisers were held and new research programs were funded.

• In January the documentary Human Timebombs was released to the public on the website http://www.humantimebombs.com

• In February an article about Diagnosis and Treatment of Alternating Hemiplegia of Childhood was published in Springer: https://link.springer.com/article/10.1007/s11940-017-0444-7

• In April a summary from the International AHC task force was released in Neurology: http://ng.neurology.org/content/3/2/e139.full

• In May an article was released: A novel SLC2A1 mutation hemiplegic migraine with alternating hemiplegia of childhood
https://www.ncbi.nlm.nih.gov/pubmed?cmd=search&term=24824604

• In June it was announced that 4 AHC associations funded the INTERNATIONAL AHC REGISTRY
http://www.iahcrc.net/news.html

• Also in June
Sho Yano MD PhD and Kenneth Silver MD published this article:
Alternating Hemiplegia of Childhood: A Physicians’ Guide for Diagnosis http://www.raredr.com/news/ahc-guide-diagnosis

• in September the 6th Symposium on ATP1A3 in Disease took place at the Palace Hotel Tachikawa in Tokyo, Japan.

• 2018 Symposium on ATP1A3 in Disease will take place at the Northwestern University Medical Center, Chicago, Illinois USA on October 13th and 14th (Saturday to Sunday)

http://www.atp1a3disease.org