Festive News from ASUK


Festive News from ASUK

Date: 14 Jan, 2026  No Comments

Festive Wishes

At this time of year, many of us pause to reflect. For some, it is a joyful season filled with celebration, connection and warmth; for others, it can feel quieter, more complicated, or even overwhelming. Wherever you find yourself this Christmas, we want you to know that you are an important part of the ASUK community, and you are not alone.

As we look ahead to the New Year, we do so with hope and optimism. We are excited to be preparing new research projects set to get under way in the coming months, and we are looking forward to sharing more about these soon. We are also pleased to let you know that our printed ASUK newsletter will be delivered in the New Year, offering another way to stay connected with our work and with one another.

In this e-news, you’ll find a few gentle ways to support yourself and get involved — from top tips to help stay calm through the festive chaos, to an exciting save the date for our very first Family Festival, coming this summer. You’ll also find opportunities to share your voice as part of the Rare Disease Day campaign, helping to raise awareness and make sure lived experiences are heard.

We are so grateful to each and every one of you for being part of our diverse, supportive and compassionate community. As the year draws to a close, we send our warmest wishes to you and those close to you, and we look forward to walking alongside you in the year ahead.

We couldn’t resist including a fabulous festive picture, from our recent children’s clinic in Birmingham, where Santa flew in to surprise the children!

With heartfelt thanks and seasonal wishes,
The ASUK Team

 

Festivities Begin!

Our first ever ASUK Festive Fashion Day began on the 1st December 2025! ✨

The team at ASUK dug out their sparkles, jumpers and hats to bring some festive cheer.

If you’re skipping Christmas cards this year, we’d be so grateful if you’d consider making a donation to Alström Syndrome UK (ASUK) instead. Every contribution, big or small, helps us continue supporting individuals and families living with this ultra-rare condition.

📸 We’d also love to see your Festive Fashion!

Share your photos on Facebook and tell us your favourite festive memories — let’s spread joy and brighten up everyone’s timeline this December. 

🎁 Every penny really does make a difference.

You can donate easily and securely by following the link to Just Giving below.
Let’s brighten the season together — with kindness, colour and a little festive fashion! 
You can donate safely through JustGiving HERE
 

Unwrapping Calm

The holiday season is a busy time for everyone and as a result it can sometimes be stressful.

ASUK Wellbeing Coordinator, Melissa has brought together some useful top tips and strategies to prioritise your time, how to set boundaries and how to make the season, including gift giving, as accessible as possible.

Check out the Guide to Calm and Accessible Top Tips HERE
The RNIB have also brought a wonderful guide ‘The Joy Makers’ Guide to Christmas‘ which is full to the brim of accessible fun-filled activities from crafts, experiences, presents and ways to enjoy the festive season together. It’s definitely worth a read…
 
Download the ‘The Joy Makers’ Guide to Christmas’ HERE
 

Protect Yourself this Winter

Flu Vaccinations
The NHS strongly encourages eligible people to get their free flu vaccine to protect themselves and vulnerable groups, especially as flu cases rise, with calls to book via GP, pharmacy, or the NHS website (link below) as the season progresses, covering everyone from young children (2-3 and school-aged) to older adults (65+) and those with chronic health conditions or pregnant, as it’s the best defence against serious illness and hospitalisation. 

COVID Vaccinations 
Our AS Clinical Experts in the UK, Dr Tarek Hiwot and Dr. Shyam Madathil have given us a statement to share with you, which we hope will alleviate some of your concerns about why many of you haven’t received the autumn booster of the COVID-19 vaccination.
Read the full statement HERE
Book your Flu vaccination through the NHS website HERE
 

Top Tips to stay well from the NHS

  • Keep warm during the day. Wrap up in lots of layers of thin clothes, even when you go to bed. Keep doors closed to block draughts. Try to heat rooms you regularly use to at least 18°C. 
  • Keep moving. Move around indoors and try to get outside for a walk. Avoid sitting for more than one hour.
  • Wrap up at night. Wear layers to bed, including socks. Use a hot water bottle or an electric blanket. (Don’t use a hot water bottle and electric blanket together.) Keep your windows closed at night.
  • Eat well. Make sure you eat a balanced diet with lots of seasonal fruit and vegetables. And try to eat at least one hot meal a day.
  • Stay hydrated. Regular meals and hot drinks can help you keep warm.
  • Have your medication on hand. Make sure you have the right medicines at home in case you get poorly. Ask your pharmacist if you’re not sure what medications you should have.
  • Stop the spread of germs. Protect yourself and others by washing your hands with warm, soapy water, covering your mouth when you cough or sneeze, and wearing a mask in public spaces.
  • Look after your mental health. The winter months can take a toll on our mental wellbeing, so make sure you’re looking after your mental health, just as you do your physical health. If you are feeling down, speak to someone – a friend, family member, or a healthcare professional like your doctor. 
Take care over the festive period and look after one another.

 

Rare Disease Day – All About Equity
28th February 2026

Equity is at the heart of Rare Disease Day 2026 — but what does equity mean to YOU?

We would love to hear from you… What needs to change in the UK to make life fairer?

Tell us about your experience with things like:

  • the postcode lottery in healthcare
  • getting mental health support
  • being a single parent carer
  • growing up with a rare condition
  • being a young person navigating care
  • having a learning disability
  • being part of a diverse or under-represented community
  • supporting children/young people with Education, Health, Care plans
  • or any other barriers you’ve faced

Your stories help us show why equity matters.

Together, we can create a world where rare disease doesn’t mean being treated unfairly. A world where care is timely, support is equal, and every family has the chance to thrive.

Change begins with your voice.

Send us your experiences, photos and videos to shares your thoughts.

Send to Catherine at catherine.lewis@alstrom.org.uk

 

Our First Family Festival 
Save the Date!



We are absolutely delighted to share some exciting news for the summer ahead!

Thanks to newly secured Sport England funding, we are busy planning a Family Festival on Saturday 11th July 2026 at New College Worcester.

This will be a joyful, fun-filled day of sports and activities for adults, children and families of all ages — a chance to come together, have some fun, try something new, and connect with others in a relaxed and welcoming environment. Whether you’re coming along with family, friends, or on your own, this is a day designed for everyone to enjoy.

📅 Date: Saturday 11th July 2026
📍 Venue: New College Worcester

To register your interest and be the first to hear more, please email Catherine.
📧 catherine.lewis@alstrom.org.uk

 

Together Fund


The Family Fund has joined forces with Variety, the Children’s Charity, to deliver TOGETHER – a new grant programme to provide disabled children with sensory toys and equipment or technology items to help with communication and learning.
Find out more and apply HERE
 

We are here for you

Over the festive period the ASUK office will be closed from 2pm on Friday 19th December 2025 until Monday 5th January 2026.

The team at ASUK would like to take this opportunity to wish you all a peaceful and joyful festive season and a bright start to the New Year.
Get in Touch