|AHC UK Newsletter – Feb 2020
Wishing everyone a very happy and healthy start to 2020.
Thank you for following our AHC UK Newsletter. If you know of other families, researchers, supporters that are not receiving this, or the previous newsletters, please forward this and ask them to sign up via this link. This is the way he has to communicate via emails now due to GDPR.In January we celebrated with our international family the International AHC day on 18th January. This year marked 8 years since the ATP1A3 gene was discovered to be linked with AHC. In 8 years, there has been growing interest into AHC research, but we all know well that there is still so much more unknown about AHC and so much more we need to understand to help our AHC champions, improve their lives and find a treatment.
In February, the International Rare Diseases day is on Saturday 29th. As you know this is normally 28th February but during a leap year, the international community chose the 29th as the date to highlight the rare nature of the disease. Rare Disease UK has UK wide events to celebrate all rare diseases. They are encouraging people to share their poster, use the hashtag on twitter etc to spread awareness of rare diseases…. And of course, this is a chance to raise awareness of AHC to the international community. See more details here The Rare Diseases group are also looking for personal stories of living with a rare disease. This is a wonderful chance to raise the profile of AHC and share your story. If this is something you would like to do then please see more details. It would be amazing to have lots of awareness of AHC through the personal stories we have of living with this horrible condition.
AHC UK Scientific and Family Meeting For those of you have been at this event for years will know, Jill Bailey (Founder AHC UK and past Chair) developed this unique event to help families meet one another and also some of the UK AHC experts. It was traditionally held in May at the National Epilepsy Centre in Chalfont St Peters outside London. It has become an important event in so many UK AHC families lives for the support it gave everyone. This is without doubt down to Jill’s incredible work over the years. More recently, a scientific day was developed for clinicians and multi-disciplinary team members to learn about AHC and share knowledge.
After much deliberation on dates, we have taken the opportunity to trial a change to this year’s Annual AHC UK Family and Scientific Meeting plan. This year, as you will be aware, the dates for the first May bank holiday are not in the traditional first weekend. This leaves a tight window to find a date which is suitable to both the professionals and families, avoiding the May bank holidays and Easter in April. Therefore, we have decided as a committee to trial a different plan for 2020. Professor Sanjay Sisodiya and Professor Helen Cross are critical to the scientific day and we have selected the date that they are available for the scientific meeting. This will be on Friday 17th April. However, as this falls in the Easter holidays and many families will not be able to attend Saturday 18th April we are planning to split the event this year and hold the family day later in the year in November. We are also looking at alternating this around the UK so we can include families that might traditionally have been unable to travel to Chalfont St Peter. This year we will start by looking to host it in one of the northern/central England cities. If this is successful we will look to alternate the years between Chalfont St Peter and another UK location for the family meetings. Therefore, please save the date for Friday 17th April if you wish to attend the scientific day. This will be aimed at all healthcare professionals, but there will be some space for family adult members who are keen to attend. If you would like your child’s neurologist/doctor/allied healthcare professional (physio, carer, nurse, OT, etc) to receive an invitation from Professor Sisodiya please can you email us at firstname.lastname@example.org with your name, your child’s neurologist’s/healthcare professionals’ name/s and their work address or ideally their email. We are currently looking into opportunities to web-stream the event (or some of the lectures) to healthcare professionals and will be in touch more regarding this in the future.
We want the AHC UK Family Meeting in November 2020 to be a date that suits the majority of families. We also want to look at a location in North/Central England that has good transport links for families and that again suits the majority of people. Therefore, we would like your input for deciding the date and place. We have created two separate doddle polls. Please can you fill in both doddle poll for your preferences?
1. To select your preferred weekend date in November for the Family meeting please complete this doodle poll
2. To select your preferred location for the November Family meeting please complete this doodle poll
Many of you will be aware that our website has moved from www.ahcuk.co.uk to www.ahcuk.org. This was initially outside of our control due to server issues. However, it has meant we have taken the opportunity to register a website that will be in line with the CIO charitable status we are applying for as our website is now registered as an organisation. This also means we have a new email for anyone wanting to get in touch with AHC UK which is email@example.com
The website is currently under construction. However, we are keen to hear of any key things you would like to see on the website that you feel would be helpful as a person with AHC, parent, family member, researcher. Please get in touch with our committee communications rep Abhishek Behl at firstname.lastname@example.org if you would like to share ideas for the website.
CIO status update
As you will know from my September newsletter last year, we started the process of applying for CIO status. This will allow us to have charitable status and is designed for smaller groups who would not traditionally meet the requirements for full charity status. Naturally, this has been a lot of work, but I’m pleased to say we are nearing completion of the initial stage where we will be able to submit the multiple documents to the charity commission and await their decision. I will, of course, update you on the process as it proceeds. If you have any questions or concerns, please do get in touch with me at email@example.com With very best wishes, Adrian Kowal
(Chair, AHC UK)