Showing posts with label Spinal Muscular Atrophy. Show all posts
Showing posts with label Spinal Muscular Atrophy. Show all posts

Wednesday, 25 April 2018

Mark training for Channel Challenge, Elsie-Rose & SMA Type 1


As I've mentioned a number of times now, Mark Little and 3 other Team members are going to cross the English Channel by kayak in August, leaving from Dungeness, and landing in Boulogne several hours later, no doubt with aching arms! Why? Well, to help raise funds for local lass Elsie-Rose, the Elsie-Rose & Friends Foundation, and to ensure greater awareness of SMA Type 1.

Elsie-Rose was diagnosed with SMA (Spinal Muscular AtrophyType 1 in September 2014, a condition that causes severe muscle weakness, and creates problems with movement, breathing and swallowing. Sadly, without intervention, most children with SMA Type 1 die within the first two years of their shortened lives. However, with her courageous and strong character, Elsie-Rose strives to enjoy life just like any other 4 year old!

Mark practicing out there!

The Elsie-Rose & Friends Foundation was also set up to provide help and financial support to families with disabled, sick, and terminally ill children. After meeting Elsie-Rose and members of her family, Mark and his team decided to take up the challenge and kayak across the English Channel with the aim of raising money for Elsie-Rose, and for the Foundation.

Consequently, they are seeking donations via Crowdfunding to go towards the cost of any special equipment Elsie-Rose may need, and to provide the Elsie-Rose & Friends Foundation with funding and to support other families in need. There is also a collection box and sponsorship forms at the Dolphin Inn, 11-12 Rock-a-Nore Road, Hastings TN34 3DW.

A wee bit closer

If you wish to know more about Elsie-Rose and the Elsie-Rose & Friends Foundation you can go to their facebook page or twitter page. If you would like more information about SMA Type 1, go to the Spinal Muscular Atrophy website.

To help support the courageous young Elsie-Rose and others, a donation via Crowdfunding would be very gratefully received, or visit the Dolphin Inn and make a pledge to support the Kayak Team, or add to the collection box, many thanks!

Friday, 23 March 2018

Elsie-Rose & Friends Foundation Fundraising Update.


Following Natasha Kelly's successful completion of the Hastings Half Marathon on Sunday and raising nearly £1,500 for the Elsie-Rose & Friends Foundation (blog), this is an update on how the fundraising is going for Mark Little and the 3 other volunteers in his team, who will be kayaking across the English Channel from Dungeness to Boulogne in August (blog). They will also be fundraising in support of the local 4 year-old with Type I SMA (Spinal Muscular Atrophy), Elsie-Rose, whose grandfather and other family members work in the local fishing industry, and the Elsie-Rose & Friends Foundation. 

Young Elsie-Rose was diagnosed with Type I SMA in September 2014, a condition that causes severe muscle weakness, and results in problems moving, eating, breathing and swallowing. Without intervention, most children with Type I SMA die within the first 2 years of life, however, the resilient Elsie-Rose strives to carry on and enjoy life just like all other 4 year olds, or more so! 

Because many of the expenses involved in supporting children with Type I SMA are not provided by the Department of Health or NHS, the Elsie-Rose & Friends Foundation was set up to help provide help and financial support to families with disabled, sick, and terminally ill children. After meeting Elsie-Rose and her family, Mark and his team decided to kayak across the English Channel with the aim of raising money for Elsie-Rose and the Foundation.  


Donations are being sought via Crowdfunding which will go towards necessary equipment for Elsie-Rose and her carers, and to contribute funds towards the Foundation so that it may support other families in need. So far £440 has been donated via Crowdfunding, many thanks! There is also a collection box for donations and sponsorship forms in the Dolphin Inn at 11-12 Rock-a-Nore Road, Hastings TN34 3DW. 

If you wish to know more about Elsie-Rose, the Elsie-Rose & Friends Foundation and their campaign, you can go to their facebook page or twitter page. If you would like more details about SMA Type 1, go to the Spinal Muscular Atrophy website. 

To make a contribution towards supporting this brave 4 year-old and other children with similar problems, please make a donation via Crowdfunding or go and visit the Dolphin Inn and make a pledge to support the team's kayaking challenge, or add to the collection box, indeed, all contributions are very gratefully received, many thanks!

Sunday, 18 March 2018

Hastings Half Marathon 2018, Today's The Day!


Well, today's the day for the 34th Hastings Half Marathon (website), starting at 10.30 at Sea Road, by Grosvenor Gardens, St Leonards, and finishing there some time later, and the weather doesn't look to be this inviting...


Many runners will be raising money for various charitable causes, including Natasha Kelly (Elsie-Rose & Friends facebook page), who is running to raise money for the Elsie-Rose & Friends Foundation: see my recent blog about the kayaking event across the English Channel to raise money for Elsie-Rose and the Foundation, and which also gives information about Elsie-Rose and Type 1 SMA (Spinal Muscular Atrophy). I am supporting this event too, and here is a link to the Crowdfunding Page which has raised £420 so far towards the Foundation, many thanks to all who have contributed. All donations to either Natasha and her run, or Mark and his team and their channel crossing will be deeply appreciated, cheers!


For more details of the route and map and warm up advice go to the website.

My best wishes to Natasha, the Hastings Lifeboat runners raising money for many charities, and everyone else who bravely runs the Hastings Half Marathon today, and make sure you wrap up warm if you're a spectator!

Tuesday, 6 March 2018

Raising Money for Elsie-Rose and SMA Type 1


The landlord of the Dolphin Inn, Mark Little, and 3 other hardy volunteers, will be taking on the challenge of kayaking across the English Channel from Dungeness to Boulogne in August to support a local lass, 4 year-old Elsie-Rose and SMA Type 1
Elsie-Rose was diagnosed with Type I SMA (Spinal Muscular Atrophy) in September 2014, a condition that causes severe muscle weakness, and which can result in problems moving, eating, breathing and swallowing. Unfortunately, without intervention, most children with Type I SMA die within the first 2 years of life. However, the resilient Elsie-Rose strives to carry on just like any other 4 year old! 
The Elsie-Rose & Friends Foundation was set up to provide help and financial support for families with disabled, sick, and terminally ill children and, after meeting Elsie-Rose and her family, Mark and friends decided to kayak across the English Channel with the aim of raising money for Elsie-Rose and the Foundation.
Consequently, they are seeking donations to their cause via Crowdfunding towards equipment Elsie-Rose may need in the future, and to give the Foundation funds it needs to support other families in need. Indeed, £350 has already been donated, including £250 from a kind anonymous donor! There will also be pots for donations and sponsor forms in the Dolphin Inn at 11-12 Rock-a-Nore Road, Hastings TN34 3DW. 
If you wish to know more about Elsie-Rose, the Foundation and their campaign, you can go to their facebook page or twitter page. If you would like more details about SMA Type 1, go to the Spinal Muscular Atrophy website.
To help support this brave young lass and others, a donation either via Crowdfunding or by visiting the Dolphin Inn and making a pledge to support the team's kayaking challenge, or to add to the collection pots, would be gratefully received, many thanks.