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 here’s wishing you all a very happy new year. We can all relate to it being a difficult year with uncertainties with Covid-19, as well as the unpredictability of AHC.

We would like to thank you for your support, commitment and fundraising over the last year. Here is our AHC UK Newsletter January 2022

Summary of our January 2022 Newsletter looks at:

  • New Committee Members
  • HIghlights of 2021
  • Last call for AHC patients (children and adults) to participate in the AHC and ATP1A3 diseases natural history study
  • Bank account update
  • 10 year anniversary of International AHC Day
  • New information on explaining AHC
  • Impact of Covid-19 on you as a family
  • Support

AHC UK Newsletter Jan 2022
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 very happy new year and Christmas. We can all relate to it being a difficult year with uncertainties with Covid-19, as well as the unpredictability of AHC.We would like to thank you for your support, commitment and fundraising over the last year. We look forward to more important AHC work in this new year; an important year as it celebrates the 10th year anniversary of the discovery of the ATP1A3 gene (the cause of AHC in approx. 80% of people) on 18th January 2022 (International AHC Day). 

The understanding of AHC and ATP1A3 diseases has significantly increased over the last 10 years, but there is still much more to understand and research with the hope that one day there will be an effective treatment for everyone with AHC.

New committee members

As we start this new year, we would like to welcome and introduce three new committee members who joined us as volunteers at the end of 2021.

Charlotte Audsley, Chloe Banks and Tom Morton.

They all have personal connections with AHC and a fantastic range of skills that we know will be a great asset to helping the charity.
Highlights of 2021

It is a year since we formally became a charity. We have worked hard to try and support our mission statement and goals of the charity focusing on Education, Raising Awareness, Support and Advocacy for families, and Supporting research into AHC.

We will continue to build on these goals this new year and would be delighted to hear from you if there is work you feel we could do within these domains. Please feel free to contact us at support@ahcuk.org

Some of the highlights of 2021 include celebrating International AHC day on 18th January 2021 by collaborating with our international community through a big social media drive to raise awareness of AHC. This was followed by raising awareness on International Rare disease day in February highlighting AHC and a fantastic Rare Coffee and Cake fundraiser.
In May we were delighted to host our first virtual Annual Family meeting. Whilst the event had to be virtual due to Covid-19 restrictions, it did allow many more families to attend and moving forwards we will be looking at hybrid events (online and face-to-face) to try and reach as many families as possible. Our family event was followed by an incredible Charity virtual fundraiser Pub Quiz.We ended the year with the AHC UK Scientific Symposium in September 2021, with a great turn out of healthcare professionals from across the UK and Europe.

We are exceptionally grateful to all the expert AHC speakers who gave such helpful talks, and especially to our two medical advisors Professor Sanjay Sisodiya and Professor Helen Cross for their assistance organising the programme and speaking at the event.
The final event for the year was a fantastic Charity virtual Festive Pub Quiz fundraiser which raised over £600.

Throughout the year, we have had families, friends and supporters continue to raise invaluable funds for crucial AHC research. At the start of this year, we were made aware that the funding was running out on an important AHC and ATP1A3 research project investigating the variation of AHC and collecting information across the UK and Ireland as part of a natural history study.

This is a research project for all with AHC (both with and without the ATP1A3 gene) and for both children and adults. Given the complexities on our current bank account situation (more information below), we made the decision to partner with Young Epilepsy to ensure valuable funds raised could get donated directly to the AHC project at Great Ormond Street Hospital.

We would like to thank all who contributed to raising funds over the last year whether it was through one of our AHC fundraisers (Rare Coffee and Cake, Summer Pub Quiz, or the Festive Pub Quiz) or through individual donations or fundraising events.
In line with GDPR, we have permission to mention some individuals who have raised funds through various activities across the year. If you have raised funds and would like to, please do get in touch as we would love to feature you on our website and blog.

Holly Grove School – raised money with a school Mexican Smile
Samuel – raised money with a Marathon Run for Anya
Jane – raised money by running the Surrey Half Marathon whilst pushing a buggy and her little one.
Andrea – raised money through a static cycle of “Tour de Yorkshire “.
Jade and Greencroft North Medical Surgery – raised money by Wearing Christmas Jumpers.

Vonnie – raised money by hand-knitting and selling Arran jumpers

Thank you to all of you who have given donations additionally, both large and small, we are extremely grateful.Through all these events above, and more kind individual donations we have raised £10,799, and an additional £15,000 donated from Young Epilepsy for the AHC and ATP1A3 project at Great Ormond Street run by Dr Katerina Vezyroglou (Link to the project).

This is an incredible amount and has been a lifeline to allow this valuable work to continue this year.
Last call for AHC patients (children and adults) to participate in the AHC and ATP1A3 diseases natural history study

Many of you will be aware of Dr Katerina Vezyroglou’s project investigating the Natural History Study of AHC and ATP1A3 Diseases. If you want to find out more about her project, Link to more information hereAlternatively, you can contact her directly and she will happily chat more about this with you. Her email is k.vezyroglou@ucl.ac.uk

Last year, due to the Covid-19 pandemic, she extended the time to register for this. The deadline now for registration is the end of January. If you would like to be in it, or if you would like your child to be in it, then please get in touch with her before the end of January. You can chat with her, under no obligation to sign up for it, to get more information before deciding. This is for adults and children with AHC (both those with the ATP1A3 gene and those without a genetic cause) and for any with ATP1A3 diseases. It is also for anyone with those criteria who live in the UK and the whole of Ireland.

This study is aiming to understand the variation how AHC and ATP1A3 diseases present and collect information on the different types of medications tried, investigations and many other factors. You do not need to be in London to take part in this, and much of the data can be collected by linking the information already done in your local hospital.
The information from this study also feeds into the International AHC Research Consortium OBSERVE AHC project.

For those already in the study, she will be in touch in the coming weeks/months to undertake a survey with you. This was delayed as the priority was to maximise recruitment and extend this deadline until the end of January 2022.
Bank account update

As you are aware we formally became a registered UK charity in December 2020. As part of the set-up of this new charity, we must form a new bank account. We have been in the process of doing this since December 2020. Unfortunately, due to Covid-19 small charities have been significantly affected by reduced access to new charity bank accounts. This has been recently acknowledged in a discussion in the third sector.Many of the banks that would traditionally have easily allowed small charities to open new bank accounts, have reduced their services, and are now not catering for new small charity bank accounts. We are not the only small charity affected by this sadly. Whilst we have tried several banks, and gone through the application process, we have later been informed they also have changed their policy and cannot accommodate new small charity bank accounts.

This process has been lengthy and extremely frustrating. We have now applied to a bank (CAF) that is recognised as being supportive of new small charities in this situation. Our application is in process, but they have stressed that due to Covid-19 the normal timeframe is removed and there will be lengthy delays in processing all new applications.

We will keep you informed as soon as we have further news, which we hope will be positive at last. In the meantime, we continue our partnership with Young Epilepsy to allow us to fundraise for the AHC project mentioned above that was at risk of closing without funding. This partnership means any funds raised directly via the registered link we have established will go directly to this AHC project (Link to Donate). We are extremely grateful to the individuals and groups that have raised money over this year and contributed through our link allowing this vital research project to continue.
10 year anniversary of International AHC Day

On 18th January 2022, it will be 10 years since the discovery of the ATP1A3 gene which was publicly announced on this day. Since then, this day has been used to recognise AHC internationally. We look forward to raising awareness with the international AHC community. Whilst there has been so much achieved, there are still many questions that need answered by research and importantly the families, children, and adults with AHC are desperate for an effective treatment. We hope to work with the international community to drive forward research and awareness in this important year.

We will be planning some social media events so please follow our updates over the next two weeks and join in with us.
New information on explaining AHC

We are delighted to highlight some new leaflets produced in collaboration with EpiCare (European Rare Epilepsy Group) highlighting AHC. There are several leaflets with one aimed at healthcare professionals and several aimed at patients and carers.
You can find the leaflets here to download here.

As a charity we will be working on more information and resources that can be useful for patients, families, carers, and healthcare professionals. We are collating a list of information that families would find helpful. We are keen to hear from families and healthcare professionals about what they feel is needed additionally.


Impact of Covid-19 on you as a family

Research is being undertaken by Edinburgh University to try and understand how the pandemic has impacted on. They are keen to hear from families across the UK with children with intellectual disabilities between 5-17 years. Please see the link here if you are interested in taking part.

AHC UK is not involved in this research but highlighting it for any families who might be interested as we know that many families have suffered from the loss of services during the pandemic.
Support

Whilst a new year can be an exciting time of hopefully positive things to come, for many it can also be a difficult time. We know that AHC alone is an immensely challenging condition to juggle every day, but on top of that the added pressures of a global pandemic can be incredibly hard. We would like families to know about the online private facebook group just for families if you would like to meet other families virtually. It is a supportive group.If there is information you feel we can help you with, please get in touch at support@ahcuk.org

Additionally, it is important for everyone that they feel they have someone to talk too, particularly at this time of year. These are some helpful links should you need to talk to someone.

Breathing Space

Samaritans

If you have any questions or comments we would love to hear from you, so please don’t hesitate to get in touch with us via our ‘contact us’ section on the website www.ahcuk.org or via email support@ahcuk.org

With best wishes

AHC UK Committee

By A BEHL

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