Another Planet Hastings Charity Donation

Marion and David H and Dave G of Planet Hastings Crazy Golf Club yesterday donated £85, via their collection box in the Dolphin Inn, to Armed Forces Bikers (website). Armed Forces Bikers is a registered charity (no: 1147967) that assists former members of the UK armed forces in need as a result of physical or psychological harm suffered whilst in service, to help them resettle and/or rehabilitate into civilian life following service, and to relieve the needs of former members and their families.

Grants are provided for many reasons, eg to help move into rented accommodation by paying bonds, acquiring domestic equipment, to provide short-term hardship funds, to pay for training courses that help to gain employment, travel expenses to unemployed veterans for courses, meetings and interviews, and equipment, such as laptops, that help unemployed veterans find employment and write CVs.

The photograph above is of the same 3 donors when they presented Mark, landlord of the Dolphin Inn, a few years ago, with a contribution to go towards his efforts to raise money to support the Elsie-Rose & Friends Foundation (blog). 

Generous friends indeed, many thanks again!

Good News and Dolphin Sightings 2018!

The Sussex Wildlife Trust has announced that there have been 18 Cetacean (collective name for whales, dolphins and porpoises) sightings reported to the Brighton Dolphin Project in 2018 (website). This includes 10 bottlenose dolphin, 3 common dolphin, 1 harbour porpoise and 4 unidentified cetacean sightings. Indeed, when kayaking across to France in order to raise money for the Elsie-Rose & Friends Foundation (blog), Mark reported seeing 2 pods of porpoises accompanying them for part of their journey, so plenty of cetaceans around the Sussex and Kent coasts! 

If you wish to add to the records of the Sussex Biodiversity Record Centre based at the Sussex Wildlife Trust, please go to their website, many thanks.

Elsie-Rose & Friends Thank You.

The Dolphin Inn, Rock-a-Nore Road, Hastings, today received this beautiful 'Thank You' card from the Elsie-Rose & Friends Foundation for the £3,253 (blog) raised to support Elsie-Rose and the Foundation, and received on her birthday too, quality... having met Elsie, her mother, family and friends, I feel humble...

Money raised for Elsie-Rose & Friends!

I had a wander down to the Dolphin Inn in Rock-a-Nore Road this evening for the presentation of £3,253.00 to the Elsie-Rose & Friends Foundation, which is a significant contribution to the usual £5,000 required to set up a body as a registered charity (Government website).

The cheque for £3,253.00 was presented to Elsie-Rose, happily recently recovered following a hospital admission, and now she's back to school too, and to Karen (on the left of the photograph), a trustee of the Elsie-Rose & Friends Foundation; behind are Mark and Jason, who paddled across the channel on 17th of October in a kayak to raise funds, and fellow fund raisers Kerry and Paul.

Mark, Jason, Elsie-Rose and cheque!

A reminder of Mark and Jason crossing the Channel.

Thanks must go to all those who raised funds, and including a significant contribution from regulars at the Dolphin, including people donating prize money on Thursday Quiz Nights, via Crowdfunding and a special raffle (and thanks to local businesses for supplying prizes),  and through direct sponsorship.

If you want to know more about Elsie-Rose, the Elsie-Rose & Friends Foundation and/or SMA Type 1, you can refer to an earlier blog where I reported the safe return of Mark and Jason, or go to her mother's guest blog posted in August.

My respect to all and congratulations once again, Elsie-Rose is one hell of a strong and wonderful character, and I am humbled by her, her mother, and her family & friends. 👍

Dungeness to Boulogne...

 Way to go!

I reported about Mark and Jason undertaking a kayak 'marathon' across the Channel from Dungeness to Boulogne the other day (blog), in aid of raising money for local lass Elsie-Rose, and for the Elsie-Rose & Friends Foundation.

These photographs were taken on Wednesday from Will's support boat, many thanks for sharing them... It looks nice and gentle, but unsurprisingly they were both pretty tired by the finish, and I have to say that some of the boats they passed by in the shipping lanes look frighteningly large!

Not far now, well done lads!

If you want to know more about Elsie-Rose, the Elsie-Rose & Friends Foundation or SMA Type 1, you can refer to the blog mentioned above, or go to her mother's guest blog posted here a couple of months ago, my respect to all. 👍

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.

Congratulations to the Dolphin Inn!

By Steve the Beermeister:

So, congratulations to the Dolphin Inn (website), Rock-a-Nore Road, Hastings TN34 3DW, for winning the South East Sussex CAMRA Community Pub of the Year 2018!

 The Award

The Dolphin sells 6 different cask conditioned ales, 3 of which are regulars, ie Dark Star Hophead, Youngs Special and Harveys Sussex Best, so 2 local ales there. In addition, they always have 3 guest ales, with an emphasis on providing ales from local Sussex and Kent breweries.

Receiving the Award

Community pub? Certainly, the Dolphin is in the centre of the fishing quarter, opposite the Fish Market, and provides a service for the local community. You'll see fishermen, local tradespersons and artisans, retired and working, male and female, young and old! Regulars who need help get it, whether it's dropping off coal at their homes or providing food at home for those not so well, the landlord and a regular annually paint the Stacey Marie RX134 opposite (Hastings Fishermen's Museum outdoor exhibit), and various other locals help as well, including rebuilding and adding a fibreglass deck, as volunteers. And the catering side of the business is a firm champion of the local fishing industry and Hastings Fish (blog). 

Also, £thousands are raised every year for charity, including the local Winkle Club, RNLI Hastings Lifeboat, St Michael's Hospice, and, this year, making a specific campaign to raise money to support the grandchild of a local fisherman, Elsie- Rose, and for the Elsie-Rose & Friends Foundation (blog).

All in all, nice one Mark, Maureen, family & colleagues!

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.

Dungeness, next stop Boulogne, in aid of Elsie-Rose...

Elsie-Rose

This morning, about 05.15, Mark and Jason posing inside the Dolphin Inn, Rock-a-Nore Road, before leaving to undertake their Kayak Marathon in aid of the Elsie-Rose & Friends Foundation: see previous blog for more information.

We drove to Dungeness to meet them before they cross the Channel, Mark and Jason had come from Rye Harbour in the Support Boat (crew: Will and Keith); about 06.45.

Coming to their adoring public

Waving to their adoring public 

Off they go! 

Next Stop Boulogne; departed 06.55

By now they should be in the middle of the Channel, good luck to them!

Fund-raising/collecting pledges for this venture will carry on for the next couple of weeks, if you would like to contribute, go to Crowdfunding, or visit the Dolphin Inn and drop spare cash into the collection box please, many thanks!

The adoring public included Maureen, Louise, David, Maz, a fisherman we were standing by on the beach, and me 😉

Elsie-Rose & Friends: A Marathon in a Kayak!

Elsie-Rose

Well, it's getting very close now for Mark Little and his team, who will be undertaking the equivalent of a marathon, but using their arms rather than their legs, when they kayak across the English Channel from Dungeness to Boulogne this coming week, probably on Tuesday or Wednesday if the forecast stays true. As I've said before, this will be in support of Elsie-Rose and the Elsie-Rose & Friends Foundation. 

Local lass 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, sadly, however, the cheerful and resilient Elsie-Rose strives to carry on and enjoy life just like any other young 4 year-old, despite fractured limbs and many other complications, and she keeps on smiling! 

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.

Mark Training

Before setting off to France, indeed, on this Monday coming (20th August), from 3.30 pm at the Dolphin Inn in Rock-a-Nore Road, Hastings (opposite the fish market, fish huts and RX134 Stacey Marie Fishermen's Museum outdoor exhibit), there will be a charity raffle in support of this fundraising. 

Kayak IPA

In addition, 2 breweries have already contributed a firkin (72 pints) of ale each, and all the proceeds from their sale will go towards the Elsie-Rose & Friends Foundation (many thanks to Wantsum and Marsdens breweries), and with the likelihood of another 2 firkins in the metaphorical pipeline! Watch out for the pumpclip in the image above.

To make contributions towards supporting this brave young girl and others with similar problems, as many local people and businesses already have done, many thanks, please make a donation via Crowdfunding, or visit the Dolphin Inn and make a pledge to support this Kayak Marathon, or put something in the collection box on the bar please. Indeed, all contributions will be very gratefully received, many thanks!

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 Support UK website. 

Good luck for Tuesday, and best wishes to Elsie-Rose, her family and friends!

Congratulations to the Dolphin Inn!

By Steve the Beermeister...

Our congratulations to the Dolphin Inn for being selected as the Campaign for Real Ale (CAMRA) South East Sussex Community Pub of the Year for 2018!

The Dolphin Inn is at 11-12 Rock-a-Nore Road, TN34 3DW (tel: 01424 434326 and website) and sells 6 cask-conditioned ales (mostly local), a few of crafty keg ales, and the usual keg beers and ciders, spirits, wines, soft drinks etc... It also raises £thousands for charity every year (for example, amongst others, at the moment, the Elsie-Rose & Friends Foundation - blog), and is a centre for many locals, supporting the local fishing fleet by sourcing its kitchen from across the road, minding out for those who need help, and also supporting Hastings Fishermen's Museum and RX134 Stacey Marie (blog). Again, congratulations and well deserved!

Stacey Marie







Uke 'N' Party for Elsie-Rose!

 

I've talked about one of our ukulele bands Uke 'N' Party before (blog), well, on Monday they played in Rock-a-Nore Road, including up on the Stacey Marie (facebook page) with a wee bucket to support Mark et al and their cross Channel Kayak Challenge in aid of raising money for Elsie-Rose and the Elsie-Rose & Friends Foundation; see past blog for more information.

Elsie-Rose

 

They certainly were the centre of attraction whilst they played up on Stacey Marie, in front of the boat, and later on the balcony of the Dolphin Inn, strangers to Hastings looked a wee bit puzzled, but we all know Hastings likes to party and raises funds for charity like nowhere else!

 

Anyway, during their time entertaining anyone who wanted to stop and listen they raised £125.04 towards the Kayak Challenge, many thanks for their time and the entertainment they provided, cheers!

Indeed, if you would like further information, as I said above, a number of my blogs provide this, or you can go to Crowdfunding and make a donation, for which we would be extremely grateful, many thanks!



Planet Hastings Crazy Golf & British Championships 2018 AND

OK, a library photograph! 

If you want to play on the Pirate Golf, one of the 3 courses at Hastings Adventure Golf, this weekend (website), you may well have a problem, no, not snowfall! That's a library image of mine (pretty picture), however, there may well be some light rainfall this afternoon and tomorrow (Sunday) morning... Oh yes, back to the point, this weekend Hastings hosts the British Championships 2018 (website), so expect congestion or, more likely, the Pirate Golf course will be closed to non-competitors!

Talking about Planet Hastings Crazy Golf Club reminds me of the recent generous donation they gave to Mark Little, contributing towards his 4-person team and their crossing the English Channel by kayak challenge in 3 months time (August). They will be travelling from Dungeness to Boulogne (Mark et al, not the 2 Davids and Maz) in aid of raising funds for the Elsie-Rose & Friends Foundation.

Local lass, young 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 moving, swallowing, consequently eating, and breathing. Without appropriate intervention, most children with SMA Type 1 die within the first 2 years of their lives sadly. Thankfully, the resilient Elsie-Rose is determined to carry on and enjoy her family life just like other young children of her age!

Elsie-Rose

Because many of the expenses involved in supporting children with SMA Type 1 are not provided by the Department of Health, NHS, or local services, the Elsie-Rose & Friends Foundation was set up to 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 that they would raise funds for Elsie-Rose and the Elsie-Rose & Friends Foundation by kayaking across the English Channel.

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

If you would like to make a contribution towards supporting this courageous wee lass and the Elsie-Rose & Friends Foundation please make a donation via Crowdfunding. Or you could visit The Dolphin Inn, 11-12 Rock-a-Nore Road, Hastings TN34 3DW, and make a pledge to support the team's kayak challenge, and/or add to the collection box on the bar, indeed, all contributions would be very much appreciated, many thanks!

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 Atrophy) Type 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!

Planet Hastings Crazy Golf Club Donation

This is another 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 in support of Elsie-Rose and the Elsie-Rose & Friends Foundation. The two Davids and Maz today, ie the Planet Hastings Crazy Golf Club, donated £142 towards the cause on behalf of Elsie-Rose, many thanks!

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 young children! 

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.

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 young girl and others with similar problems, please make a donation via Crowdfunding or 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!

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!