Tuesday's Regular Old Town Guided Walk

Tomorrow (28th August) will again be blessed with an opportunity to take part in the Old Hastings Preservation Society's (OHPS) regular Tuesday afternoon free guided walk of Hastings Old Town. If you wish to follow the walk you need to meet up by the top of the West Hill Lift for 2.30pm. A volunteer guide from the OHPS will show you around the old town, with its historic buildings, twittens, and its many stories, and will tell you about the wealth of talented celebrities of their age who have visited and/or lived here, for example, artists in the early 19th century, including J.M.W. Turner (blog), indeed, the celebrities keep on arriving in the early 21st century!

The walk will proceed across the West Hill and lead gently downhill into the old town, with a number of steps involved, and will last about 2 hours. The OHPS provides for this guided walk free of charge, though as a registered charity, they would be very grateful for all donations made, many thanks (website). You are advised to wear comfortable walking shoes, and the weather is forecast to be cloudy with sunny intervals (Met Office). Enjoy the afternoon!

Hastings Vegan Fayre today.

This August Bank Holiday Monday (today) sees the annual Hastings Vegan Fayre at the Stade Hall TN34 3FJ, between 10.30 am and 4.30 pm (website). 

Today should see a much brighter day than yesterday, fingers crossed (Met Office), and so it should be an easier public holiday to enjoy! At the Vegan Fayre will be a wide range of stalls with gift choices, food, cruelty-free products, speakers, music and films... 

It's a "Fab day out!"

Hastings Pier

You'll notice these photographs were taken yesterday (blue sky), anyway, I only found out yesterday that Hastings Pier now opens at 09.00 in the morning... Most people already were aware, I'd imagine, so sorry if a bit late with the news!

Second point, and maybe they need a change of bar and/or cellar manager, but you shouldn't really be storing full kegs of beer in the open, particularly in the sun... That's 200 gallons of lager, bitter and cider warming up nicely!

I do intend to write very soon with an update about the Friends of Hastings Pier, but everyone else keeps beating me to it, though I will write again soon, promise 😉

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.

Hastings Pride 2018 - Today!

Today's Hastings Pride Festival is situated up at The Oval, Bohemia Road TN34 1ET (website). The festival is free to attend, is for the community, and aimed to be inclusive, fun, and entertaining, but do dress up for the weather, if not for the festival; the forecast isn't that great (Met Office). It starts at 12.00, following the Festival Parade, that gathers from 10.00 and heads off at 11.00, at/from the car park in Cornwallis Street, at the North-East corner of St Andrews Square, on its way to The Oval (website).

The Festival includes music, comedy, food and drink, a family funfair, market and information stalls, and much more; enjoy the day!

Music & Dance: Carousel on the Stade FREE!

This evening's event for Stade Saturdays is Carousel, which starts on the Stade Open Space at 7.30pm (website). Southpaw Dance Company's Carousel tells a visually spectacular tale of a fairground after-hours, and includes a fully functioning merry-go-round as the centrepiece for a story about the characters who inhabit the fairground. As the fair shuts down for the night, its public face gives way to the celebrations and personal tragedies of this group of people. Carousel can be enjoyed as a party night of circus thrills and spills, with live Balkan and gypsy influenced music and dance (their website; includes video).

And free to enjoy, please do so!

Turned Away by the French!

OK, not quite the "NON!" of  de Gaulle, and you have to be of a certain age to know what I'm talking about 😉 but Mark & company were stopped from crossing into French waters (two-thirds of the way across!) because, well, you can't really be upset, it was for their own safety... Thick fog! Mark told me he could hardly see his hand in front of him, and those bigger ships in the shipping lanes are BIG! Anyway, good practice, Mark and Jason feel very confident (they were managing a great speed of 4 knots!) and they're going over again in a couple of weeks time. They'll make it, no doubt...

Watch this space!

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 😉

The OHPS Regular Old Town Guided Walk...

Another new week begins, but one regular summer arrangement continues, happily, the Old Hastings Preservation Society's (OHPS) Tuesday afternoon free guided walk of Hastings Old Town can be experienced tomorrow. If you would like to join the walk, it meets up by the top of the West Hill Lift at 2.30pm (21st August). A volunteer guide from the OHPS will show you around the 'old town' of Hastings, with its historic buildings, twittens, tales and stories, and share knowledge of the talented celebrities of their age who have visited and/or lived in Hastings, for example, the Pre-Raphaelites in the 19th century (past blog); and 'celebrities' keep on arriving!

You will cross the West Hill and head gently downhill into the old town, with a number of steps involved as you would expect, and the walk lasts about 2 hours. The OHPS provides for this guided walk free of charge, though, as they are a registered charity, they would be very grateful for all donations made, many thanks (website). You are advised to wear comfortable walking shoes, and, as the weather forecast for tomorrow afternoon is bright and sunny, (Met Office), applied Factor 50 and/or donning a head covering may be appropriate...

Whatever, enjoy your day!

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!

The Jolly Fisherman, Hastings First Micropub...

By Steve the Beermeister:

The Jolly Fisherman (facebook page) is at 3 East Beach Street, Hastings TN34 3AR (tel: 01424 428811), and is now a micropub as well as a B&B. Opening hours (usual, but can be a little flexible) are Wednesday/Thursday 12 noon to 10pm; Friday/Saturday 12 noon to 11pm; Sunday 12 noon to 10.30pm; closed Mondays and Tuesdays (and for a one off, also closed just for this Wednesday 15th August 2018). Previously, it had been a cafe bar, as well as a B&B...

The current owners, Oliver and Becky, took over the premises a couple of years ago, converting it from a Pie & Mash shop/cafe/restaurant and B&B, into the Cafe Bar and B&B, and which is now a Micropub and B&B; and can be found on the Micropub Association micropub finder.

Foyles Pie N Mash

In its earlier life, The Jolly Fisherman was a public house for the 125 years from 1834, when James Mann became the first licencee, until 1959, when the landlord was Brian Hone. Brian had held the licence from 1954, and Hastings Winkle Club (see older blog) was based at The Jolly Fisherman between 1954 and 1959, with Brian as the Winkle Club Treasurer during those 5 years. Please note, I have found this information in David Russell's informative book The Pubs of Hastings & St Leonards 1800-2000 (2014, publisher: Lynda Russell, pp171-174). It is great to see the building returned to an earlier use, more of below...

Walking into The Jolly Fisherman I was rewarded with a friendly greeting from Oliver, as I was bombarded with information above, in front, and to the side of me! First there is an impressive list of Belgian beers available here; memories of 15 years of regular visits to my brother when he lived in Brussels came to mind. Immediately above the bar (photograph below) are details of the 3 ciders/perries, 2 crafty keg beers, and 3 cask-conditioned ales (all local) on offer, though only 2 real ales were available this day because of the extra day closed this week.

Real ales available were Pig & Porter (website) Black Pale (4.2%) and Brighton Bier (website) Batting Practice - Three C's Pale (3.5%), a refreshing seasonal pale bitter, very easy to drink, and with tropical and citrus in the flavour, obviously the result of the 3 C's hops from the USA used late in the brewing process, and dry hopped too. Also, me loving ales from the not-so close brewery, I had to have a pint of the Tiny Rebel perry (website) Peariscope (4.8%), which did what it should, nice balance of bitter and sweet, and very nice too, thank you very much!

What of the B&B and food then? Well, there are 3 large bedrooms upstairs, one family room and two doubles, one of which can take a further camp bed if required, so a maximum of 9 people at a time, and there is just about enough room to seat them all for breakfast in the bar area. Food on offer is a Tapas style menu at lunch, and in the evening; as can be seen to your right as you enter The Jolly Fisherman (photograph above); a very interesting selection indeed!

I shall be returning soon, cheers Oliver and Becky! 😉

Hastings Old Town Guided Walk

Well I seem to have sorted out my IT problem, but don't hold your breath... Anyway, tomorrow (14th August) will again be blessed with an opportunity to take part in the Old Hastings Preservation Society's (OHPS) regular Tuesday afternoon free guided walk of Hastings Old Town. If you wish to follow the walk you need to meet up by the top of the West Hill Lift for 2.30pm. A volunteer guide from the OHPS will show you around the old town, with its historic buildings, twittens, and its many stories, and will tell you about the wealth of talented celebrities of their age who have visited and/or lived here, for example, a number of the Pre-Raphaelites in the 19th century (blog), indeed, the celebrities do still keep on arriving!

The walk will proceed across the West Hill and lead gently downhill into the old town, with a number of steps involved, and will last about 2 hours. The OHPS provides for this guided walk free of charge, though as a registered charity, they would be very grateful for all donations made, many thanks (website). You are advised to wear comfortable walking shoes, and the weather is forecast to be fair again, though likely some cloud (Met Office). Enjoy the afternoon!

Hastings parks win national awards, yet again!

Hastings Country Park

Hastings Country Park, Alexandra Park, and St Leonards Gardens have all won Green Flag Awards (website), an extra notch from last year (blog).

Alexandra Park

St Leonards Garden

In addition, Alexandra Park (blog) and St Leonards Gardens (blog), both the creations of award-wining designers, received Green Heritage Site Accreditation for their historic management. Congratulations to them all, and to all those who work to preserve these excellent green spaces for Hastings, nice one!

The Carnival is over!

The Carnival Parade on Saturday, not quite here yet, but a crowd's gathered...

 

So a wander down the road, and the Coastguard truck at the front...

 

And a few on foot following the Coastguard truck...

 Lifeboat coming up!

The lifeboat and crew/volunteers, and with her last journey as the leading light of the Hastings Old Town Carnival Parade. In case you weren't already aware, the new Shannon Class Hastings lifeboat will be arriving this autumn, apparently it is too long to get around the roundabout at Iceland, though you will still be able to view the new boat at the lifeboat station, when it isn't out on call.

Respect to the RNLI lifeboats and their crew and volunteers!



Old Town Walk - Back to normal...

Well, the Carnival is over, and the Old Hastings Preservation Society's (OHPS) regular Tuesday afternoon free guided walk of Hastings Old Town is back to just it's usual day, for now. The walk meets up later today, by the top of the West Hill Lift at 2.30pm. A volunteer guide from the OHPS will show participants around the old town of Hastings, with its historic buildings, twittens, tales and stories, and share knowledge about the number of talented celebrities of their age who have visited and/or lived in Hastings, eg a number of the Pre-Raphaelites in the 19th century (past blog), and they keep on arriving!

The walk will cross the West Hill and head gently downhill into the old town, with a number of steps involved, and lasts up to 2 hours. The OHPS provides for this guided walk free of charge, though as a registered charity, they would be very grateful for all donations made, many thanks (website). People are advised to wear comfortable walking shoes, and the weather is forecast to be sunny, mostly, but with the chance of a shower (Met Office), so maybe an umbrella, light waterproof clothing, and Factor 50 and/or head covering may be appropriate!

Whatever, enjoy the afternoon!

Hastings Old Town Carnival, still occurring!

So, the Pram Race was blessed with lovely weather this year, thankfully, and here is the Lifeboat team halfway round in the High Street (with many thanks to their facebook page for the image, cheers!), and the full sized lifeboat may well be in the parade on Saturday (though the new Shannon Class lifeboat due for arrival in the Autumn may not be in the parade next year, apparently, due to technical reasons, as in it is longer, I believe!), anyway, a wee bit larger than the excellent lifeboat 'pram' on show above!

Plenty still to come, of course, walks, exhibitions and so much more, for example, today (Thursday) sees the Whelk Eating Competition, 5.00pm at Reeves Corner, and the Grand Charity Auction from 6.30pm at the same venue (with thanks to their website for this image, and for more details of events). Although events carry on into Sunday (website), the real culmination of the week is the Grand Carnival Procession which starts at 5.00pm from Rock-a-Nore Road on Saturday (website); though some local roads will be closed off to normal traffic from 3pm until 8pm!

Whatever you do, please enjoy yourselves!

I'm still having IT issues, so my apologies for brief and irregular blogs, I should be back to normal in a week or so, fingers crossed...