Last year, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! In her latest blog, she’s sharing how she’s finding the challenge and why she decided to go alcohol free for one year.
“Well, hello again! I am sat looking out at the first patch of sunshine we have had for a while, accompanied by some positively balmy weather. I have actually opened windows; would you believe it? Even Charlie dog has agreed to go outside without a gentle nudge, with no baleful look back over his shoulder at me.
So, spring might finally have sprung!
Student-ing is going well (I think). Many (so many) assignments went in a couple of weeks ago, and I am sat awaiting results and trying not to think about it. Fortunately(?), we are straight into the next teaching block, so no time to dwell on what might be.
So – to alcohol – or the lack of it.
I’m not going to lie, there have been some evenings when I would have loved a glass of wine. One such occasion was on the day of my final submission when I tried to convert a script from a specialist programme to a PDF to send to my tutor, and it vanished from the screen. Totally gone. I had two hours to type the entire thing again, heart pounding, to get it in on time. Thank the Lord I had printed off a hard copy first.
Our daughter, Molly, then came home from school, pressed a few buttons, and hey presto, there it was! Whilst I was very grateful, this would have been much more helpful three hours earlier. I swallowed that thought down – to be fair, not her fault – and thanked her. But arrgh!!
Since May last year, I have been deprived of alcohol to help raise funds for this wonderful charity, Metabolic Support UK (MSUK).
Why am I doing this?
MSUK have been amazing in supporting people with a wide variety of metabolic diseases. In particular, my husband, Carl, who has Pyruvate
Kinase Deficiency. Especially during lockdown, Carl found that being able to talk to somebody outside the family who understood how he felt really helped him.
There is also a light-hearted Zoom chat called Coffee Beans where people with an Inherited Metabolic Disorder, and/or their families, get together. I’ve heard many a belly laugh from Carl as I have ambled past.
So far, we have raised £335 online with your lovely help, and I have just been given another £100 in cash, making the total so far £435. This is amazing, but I am hoping that we could manage a little more before this challenge finishes in May. If you can help some more, here is the link to follow: https://uk.virginmoneygiving.com/SusanLander.
Thank you everyone for your support so far; onwards and upwards!”
Thank you so much to Sue for your amazing support and if you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org
I have included a picture of my new, adored, Moomin mug full of the aforementioned hot chocolate. Because, let’s face it, who doesn’t want to look at a Moomin mug?
Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! One month on, we’ve been catching up with Sue to see how she’s finding the sober life!
depend on when the hospital can fit him in. Consequently, he is looking forward to feeling less exhausted through a low HB. We are even considering going to sit outside a cafe with a cup of tea. I know, it’s amazing how such a simple action seems fraught with danger. Who needs bungee jumping for thrills?!
Are you looking to expand your baking and cooking repertoire? Experimenting with new recipes can be good fun and who doesn’t enjoy some variety at mealtimes. But do you find yourself asking why didn’t my bread rise? Or why does my pasta stick together?
differentiate between play time and the need to do school work, routines will help them adjust. Wake your child up at the usual time that they would get up for school, follow the usual “getting ready for school” practices and you may even want to get them to put on their uniform, so that they’re aware that today is a school day.
find ways to teach. There are lots of useful resources out there – take a look at our recommended resources guide at the bottom of this blog for further inspiration.
or the time of day and the app will suggest a meditation according to your mood and your current time of day.
ways. Plus, it has a happy ending. It’s one of our all-time family favourites and a must-watch!
Support UK!
merchandise that you have, to promote awareness of a cause that you support. Add the donation details of your charity to your photo to make it easier for your followers to send a few pennies along to your chosen charity.
could have a night watching astrology documentaries or space-based films, hold a star-gazing evening and teach others about the different constellations in the sky, or host a dinner party with space inspired foods!
Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had 
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
Our 
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
Who 
of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.
The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.
5. Do you have a favourite running route?
of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
We hope your training continues to go well Mike!
2. Raise Awareness
Connecting People
