Charity Raisers return from France!

Mark returns!

OK, so we've been writing about Mark and Jason and their plan to kayak across the English Channel/La Manche to raise money for Elsie-Rose and the Elsie-Rose & Friends Foundation for ages now (eg blog)... and now they've only been and done it, congratulations to all! Indeed, Jason was allowed into France without his passport, the French authorities being decent beings after finding out he'd brought a bag full of his laundry, rather than a similar bag with lunch and his passport in it, true story! 

Elsie-Rose


Young local character Elsie-Rose was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in September 2014, a condition that causes severe muscle weakness and results in problems with movement, eating, breathing and swallowing. Without intervention, sadly, most children with SMA Type 1 die within the first 2 years of life. However, the cheerful and resilient Elsie-Rose strives to carry on enjoying life just like any other 4 year-old child, despite all the complications she just keeps on smiling!

Elsie-Rose angling recently

Because many of the expenses encountered supporting children with SMA Type 1 are not provided for by the NHS, Social Services or the Department of Health, the Elsie-Rose & Friends Foundation was set up to support families with disabled, sick and terminally ill children. Indeed, my respect and warm regards go out to Elsie-Rose's mother, family and friends, and Elsie-Rose herself, and how they cope with the myriad of complications involved in their lives.

As soon as all the money raised by/pledged to Mark and his team is counted I shall let you know the result. Again, well done, and more photographs to come!

If you would like to know more about Elsie-Rose and the Elsie-Rose & Friends Foundation, and campaigns they are involved in, please go to their facebook page or twitter. If you would like more information about Spinal Muscular Atrophy Type 1 please go to the Spinal Muscular Atrophy Support UK website.

Spinraza, (not so) NICE, and SMA Type 1

Guest blog by Natasha Kelly, many thanks and respect to her:

Imagine taking your baby to the doctors to be told that they have a critical genetic disorder that will more than likely kill them before they reach their second birthday (just let that sink in for a moment).  

Now imagine part of that is to watch them lose the functions they need in order to live, their ability to swallow, to eat, to move at all, to breath before finally a common cold kills them!  

Now imagine they are completely aware as this disorder does not affect their brain at all, imagine the questions they would ask if they could and the heartbreak knowing their was nothing you could do.  

Now imagine the doctor saying their is a drug that could help, it wont cure your baby but it would stop the deteriorating and in some cases regain strength back for your baby, to eat, sit up and maybe one day walk!! (Fantastic right??)

Now imagine that your baby cant have that drug as NICE have decided its not worth the money! 😡 your baby is not worth the cost!! (Let that sink in)

This is what the SMA community are currently fighting! Please contact your local MP, come to the protest on the 7th September in Manchester or London, kick up a fuss with us, let them know our babies are worth it!! Whatever the cost!!

Many thanks again to Natasha and Elsie-Rose, now from me:

Spinraza is a medication that can be used to treat Spinal Muscular Atrophy, and is injected directly into the central nervous system. In clinical trials it has been found to halt the progression of the condition, indeed, in 60% of recipients with SMA Type 1 it has significantly improved motor function.

Although accepted for 'restricted' use in Scotland (website), the National Institute for Health and Care Excellence (NICE) has refused to support the NHS using Spinraza as a treatment in England (website). The opinion of NICE is that, although evidence provided showed a "substantial clinical benefit" it's cost is too high and there are a "a lot of uncertainties around its long-term benefits."

The protests mentioned above and organised by Treat SMA (facebook page for more details, website) are both planned for 11.30 am Friday 7th of September 2018 at the Department of Health, 39 Victoria Street, London SW1 0EU, and at NICE, Manchester City Tower, Piccadilly, Manchester M1 4BT. If you cannot be at either, we would be very grateful if you would contact your MP please; here for details. If you live in the Hastings & Rye constituency, Amber Rudd MP (details), or email her at amber.rudd.mp @parliament.uk

The young girl in question here, and local to Hastings, is Elsie-Rose (in the photograph above), a local fisherman's grand-daughter, and you may have noticed, lately I've been writing plenty about SMA Type 1 and the Elsie-Rose & Friends Foundation. If not, and you'd like to read more about both please have a look at this recent blog, many thanks, and many thanks for your support!

Don't forget #treatsma #smaawareness and #spinrazachangeslives

Elsie-Rose & Friends Foundation

Elsie-Rose


Recently I've been writing a number of reports about events that have centred around Mark Little, his kayak adventure (to be continued in approximately 10 days time!), and raising money for the Elsie-Rose & Friends Foundation (Crowdfunding).

Young local character Elsie-Rose, and this 4 year-old local lass certainly is a great character, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in September 2014, a condition that causes severe muscle weakness and results in problems with movement, eating, breathing and swallowing. Without intervention, sadly, most children with SMA Type 1 die within the first 2 years of life. However, the cheerful and resilient Elsie-Rose strives to carry on enjoying life just like any other 4 year-old child, despite all the complications she just keeps on smiling!

Elsie-Rose angling recently

Because many of the expenses encountered supporting children with SMA Type 1 are not provided for by the NHS, Social Services or the Department of Health, the Elsie-Rose & Friends Foundation was set up to support families with disabled, sick and terminally ill children. Indeed, my respect and warm regards go out to Elsie-Rose's mother, family and friends, and Elsie-Rose herself, and how they cope with the myriad of complications involved in their lives.

If you would like to know more about Elsie-Rose and the Elsie-Rose & Friends Foundation, and campaigns they are involved in, please go to their facebook page or twitter page. If you would like more information about Spinal Muscular Atrophy Type 1 please go to the Spinal Muscular Atrophy Support UK website.