Well what a crazy year it’s been for us all, but pleased to finally have Alex and Isla back at school again learning and seeing their friends – for one thing it means I can actually get my head down and do lots of work on the charity, but also keep my fridge stocked up for a while… oh and finally get my nails and hair done....
Local business, Ben’s Kitchen based at Forest Hill Golf club, adapted to lockdown by preparing and delivering delicious Sunday Dinners to customers both new and old. As well as helping the business adapt through tricky trading times, Ben’s Kitchen also decided to help two other very worthwhile causes by providing hundreds of high quality meals for NHS workers fighting COVID-19 and by donating £1 from every Sunday Dinner sold to locally-based charity Alex’s Wish....
In June the annual Morgan Sullivan Memorial Fishing Match had to be postponed due to Covid. However they did manage to put together a last minute event last weekend, there were 25 people fishing and a raffle of fishing prizes and they managed to raise £600 for Alex’s Wish....
With many charity fundraisers cancelled due to COVID-19 one group of intrepid cyclists have just completed a Coast to Coast cycle ride for Alex’s Wish....
On Saturday, 26th September 2020 – the fabulous ladies Elain Crew and Sharon De Caestecker at Wellbeing4life are organising a 12-hour Wellbeing-a-thon to help raise money for Alex’s Wish This fabulous 12-hour event is aimed at everyone looking to improve their wellbeing, it’s designed to give you lots of wellbeing tips, healthy recipies and get you trying lots of different activities for just £20 donation to Alex’s Wish....
Ed Cooper is an Business Coach and one of the commitments he made to himself in 2020 is to help business owners in his local community to gain the skills, confidence and beliefs that they need to get their already GOOD businesses to GREAT! ...
Netmetix Continues to Lend Support to Alex’s Wish Coventry-based Netmetix has pledged to continue supporting Midlands-based charity, Alex’s Wish, whose mission is to find treatments and – ultimately – a cure for Duchenne Muscular Dystrophy a life limiting muscle-wasting disease affecting 1 in every 3,500 boys born in the UK. It is the biggest genetic childhood killer condition and the most lethal and common form of Muscular Dystrophy....
Dear supporters, I hope you are keeping well and sane during these times. It feels like such a long time ago when we were able to be out and about seeing our supporters at our events, but hopefully we’ll all be able to see each other again soon....
We would love you to join us & take part in the Tour de Alex’s Wish. Pick your distance and complete your ride at your own leisure, wherever and whenever you would like, do it in one or spread it out over a number of rides....
Despite the unprecedented events of the last two months businesses are still more than happy to help charities close to their heart wherever they can. We have been literally blown away by some of the ideas and conversations that I’ve had over the last few weeks. It has made me realise and appreciate just how lucky we are as a charity to have the supporters, volunteers, Trustees and Ambassadors that we do....
Living a new normal is what we are hearing a lot about in the press and social media at the moment, with COVID-19 affecting our everyday lives – not being able to do things we always have....
Join The 2.6 Challenge from Sunday 26 April Please join The 2.6 Challenge from Sunday 26 April. It’s been created to help save the UK’s charities – 2.6 miles....
Last week saw the annual Supporters Lunch for Leicestershire-based charity Alex’s Wish take place at the newly opened Novotel in Leicester. With over 150 guests attending including trustees, business club supporters, private individuals, businesses including those who’ve chosen Alex’s Wish as their Charity of the Year, and the newly crowned Miss and Ms GB. The event served not only as a heartfelt thank you to supporters but also an opportunity to update everyone on the activity undertaken throughout the year and plans for the next 12 months....
Children with DMD experience the normal childhood illnesses and accidents. But, because their muscles are weaker, some things are more serious for them than other children....
Promising drugs for Duchenne Muscular Dystrophy (DMD) which are tested on animals do not always respond the same way in humans....
Alex’s Wish invests £30,000 into first study to examine Edasalonexent as a potential treatment for non-ambulant patients with DMD Alex’s Wish along with Duchenne UK and Joining Jack, grant US$615,056 to Catabasis Pharmaceuticals to study Edasalonexent, a new drug for DMD to be tested in non-ambulant boysThe charities approached Catabasis last year to offer funding to extend their clinical trials to the non-ambulant population Edasalonexent is a novel NF-kB inhibitor, that is being studied in patients not taking steroids....
As we approach the end of the year, it’s a great time to reflect on everything which has been going on. The last time I wrote a blog, I explained that Alex had started a new clinical trial – Givinostat – which we were hopeful would help Alex and make a difference....
Alex’s Wish 7th Annual Charity Ball took place at The Hilton East Midlands Airport. The evening was sponsored by Next and Morgan Sindall sponsored our sparkling drinks reception....
Janine Edwards Wealth Management and Antidote Art hosted a Paul Karslake Art Exhibition and dinner at Lumbers in Leicester. The evening started with a drinks reception and an opportunity to see Paul’s new collection alongside beautiful jewellery from Lumbers....
Top Line Data of 18-month Vamorolone treatment of Duchenne Muscular Dystrophy patients shows continued improvement of symptoms with reduction in Corticosteroid safety concerns....