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We had an excellent 'Picnic in the Park' on Saturday 18th August.

The weather was dry and breezy but no rain! The children enjoyed the playground whilst the adults put the worlds to right!

After enjoying our food we hit the shops in Abergavenny before heading home.

A small group of us met up at Wetherspoons in Abergavenny on a bright and sunny December lunchtime.

We enjoyed some lovely food and had a good catch up swapping stories and sharing experiences.

During this meet up I had the great pleasure of presenting the Ambassadors Award to the Horton Family.  I had the honour of receiving this award during the 2017 TSSS conference and was delighted to pass it on.  The Hortons only received the diagnosis of TS for their gorgeous little girl in October 2013 so have had very little time to come to terms with this life changing piece of news.

The fact that they so soon after diagnosis, along with bringing up their young family of 3, threw themselves into organising a fund raising event to coincide with the Awareness Day in June.  Just 7 short months after receiving the diagnosis is slightly on the rare side to say the least!

Before the Awareness Day they did the media round of talking to two local journalists, not only to publicise their event but to raise awareness of their daughters’ condition.  They even went one step further and contacted the local TV station to ask for a slot during the evening news to again publicise their event and to raise awareness of TS.  This duly happened.

This took a lot of time and energy but paid off as the event on the day was a huge success and resulted in lots of awareness being raised locally and a large donation being given to the TSSS. This bodes very well indeed for their daughter and their family in the future.

We then decided to have a quick spot of retail therapy enjoying the lovely little shops that Abergavenny has to offer and the indoor market.

Saturday 28th January saw 17 of the Friendship Group meet up in Abergavenny for a post-Christmas catch up.

We de-camped to Weatherspoons for some lunch and after putting the worlds to rights we headed into town for some retail therapy! One or two bargains were had before the end of the day.

STOP PRESS!  A family from Bridgend joined us as they are super keen to start a Friendship Group in South Wales!  This is fantastic news and we chatted over pudding and coffee about this and we went through the pack to give them some ideas and advice on what’s involved.  So, watch this space for this details on this new group. If you are interested in joining them and would like more info please get in touch. 

Contact for this group is Hayley Cleaver on 07763 606597

A small group of us met up at Wetherspoons in Abergavenny on a bright and sunny January lunchtime.

We enjoyed some lovely food and had a good catch up swapping stories and sharing experiences.

This is exactly the reason for setting up these groups. It is really priceless spending time with people who know what you are going through and can offer support.

We then decided to have a quick spot of retail therapy enjoying the lovely little shops that Abergavenny has to offer and the indoor market.

Emma and I finished off a lovely afternoon with a coffee and cake before heading home.

Just some pics of the fabulous success that was the Newport Fun Day held on the TSS Awareness Day in June. Thanks to everyone who came along and supported this event, special thanks must go to Clinton and Kelly Horton who put in so much work arranging this fantastic event which may well become an annual event due to its huge success.  I’m pleased to report that It looks like the whole event raised over £1,600 which is a phenomenal amount.

I was wondering if this was unusual but as far as we know there are at least seven women with TS in Hereford ranging from teens to nearly forty.
I have known Nicki for years and we are both patients at the same Drs surgery. We both realised that the receptionist at the surgery has TS and Rosie approached us both to tell us and we have been firm friends ever since. Over the past year or so Nicki, Rosie and I have been meeting up regularly on a Saturday to have lunch and a catch up, sometimes Hayley joins us as she doesn’t live too far away.
We talk about many things, mostly non TS related and have helped each other through house moves, job changes, family illness and many other issues life throws at us. Recently we have all been told our HRT is no longer available ( We were all on the same!) so we are supporting each other by discussing what happens next and our Drs advice etc.
We have been to a few TSSS events such a Cadburys World and Birmingham Christmas Markets and enjoyed meeting up with everyone.
In June we are looking forward to a TSSS Ladies day at the new shopping centre that is due to open very soon. I’m sure lunch and buying a few handbags will be on the agenda!
Yesterday the 3 of us got the train from Hereford to Abergavenny to join the Wales Friendship Group ( We are only 20 minutes away) and Hayley picked us up. We chatted non-stop and caught up with each other’s news.
When we arrived at Wetherspoons it was quite busy but Clare had saved us a table so that was great. We all got a drink and chatted some more. Then a lovely family, CJ and Kelly, joined us with a 3 year old with TS so we introduced ourselves to them and heard their story of how and when they found out their daughter had TS. We were amazed at how quickly they had embraced TS, how knowledgeable they were and are even organising a fundraising event for the TSSS in Newport in June! Amazing!
A short while later Vanessa, another lady came with her 6 year old who has TS. I had to save the seats for them and nearly got involved in an argument with a woman who wouldn’t believe they were taken and the people were ordering food at the bar!
Anyway when Vanessa came back I had a really good chat and realised we both worked as teachers. It was good to share our stories and the two girls played with balloons.
Then we all ventured out to the shops and I think we all bought something and chatted some more. Us three Hereford girls then got dropped off by Hayley and got the train back to Hereford with some lovely memories and smiles on our faces, tired but happy.
Anyway I’m off to start practicing for my 15 walks to work to raise money for the TSSS and want to wish Hayley well with her swimming 15 lengths too.
Em x

Saturday 5th April 2014 12.30pm – 4pm

Weatherspoons, The Coliseum, Lion Street, Abergavenny, NP7 5PH


For further details contact Hayley Cleaver on 07763 606597 or This email address is being protected from spambots. You need JavaScript enabled to view it.


Saturday 7th September 2013 saw this Friendship Group meet up in Abergavenny.

We de-camped to Weatherspoons for some lunch and a proper gossip and catch up.  We welcomed a new member to the group.  It was lovely to be able to add to this very small group and share experiences, exchange advice and chat away in lovely surroundings enjoying an excellent meal.

After putting the worlds to rights we headed into town for some retail therapy including some very early Christmas shopping!  One or two bargains were had before the end of the afternoon.

Whilst a couple of the group headed off to catch their public transport, a couple of others headed off for a well deserved cup of tea and a pudding to round off a lovely day.

We are hoping to meet up before Christmas, look out on the web-site, facebook and Aspects for details.


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