Ty Hafan Cwtch

Newsletter: Autumn/Winter 2012

Inside... • New born referrals• Our Ty Hafan Olympic Hero• See our wheelchair art!

cwtch

providing care, being thereproviding care, being there2

welcomeThere have been many changes in Ty Hafan during its 13 year history and we have been fortunate to witness how the care and support we offer to children with life-limiting conditions and their families has grown and developed.

We continue to be inspired by the lives of the children and families we have met through the years, always striving to find the best way to be there for as long as the child and family need us.

The services we provide to children with life-limiting conditions and their families are not limited by time, we really do provide them for as long as they are needed. The kind of support we give may change over the years as the needs of the child

and family change. We know that 21% of our current families have been using the hospice for short break care and other services for over six years.

Some of our bereaved families have chosen to have contact with us for many years after the death of their child; some need our care and support for only a few months.

welcomeWe are pleased that the last two years have seen a significant increase in referrals, meaning that more children and families are able to get the support that they need. Sadly the overall increase in referrals has also highlighted the fact that we are seeing more very new babies referred to us.

An increase in the number of referrals for a service which provides care and support for as long as it is needed means that the cost of provision continues to increase presenting us with bigger challenges every year.

We are tremendously grateful for the support

we have had over the years from the

people of Wales, not just in financial

terms, but in the time generously donated by dedicated volunteers.

But we still need your help to ensure we continue to be there for those families, from all parts of Wales, who desperately need our help now as well as those we will undoubtedly meet in the future.

Thank you for caring. Cath Thompson Assistant Director of Care Ty Hafan

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We'll miss you! If you do not wish to receive "Cwtch" in future,

please email [email protected] or telephone 029 2067 2060.

providing care, being there4

new born referralsOver the last two years Ty Hafan has had the opportunity to work alongside hospital based neonatal teams in providing support to several families. This support has been varied in nature and is tailored to the individual needs of each family.

Sometimes even very vulnerable babies may come to the hospice for end of life care and are able to go home, albeit for short periods.

One baby that came to Ty Hafan in such circumstances managed to have several months at home before he died peacefully with his family around him. He was referred at a few days old and was not expected to live more than a week or so.

Whilst the baby was still on the neonatal ward, plans were made for the family to come to the hospice for his last few days. Ty Hafan staff worked closely with the hospital neonatal staff and the family to arrange a safe transfer to the hospice where he and his family stayed for almost a fortnight.

During this time his parents were familiarised with their baby’s complex medical needs and how to administer his feeds and many medicines via his feeding tube. They were also reassured about what symptoms and side effects he may experience.

Not only did the family develop confidence in caring for their baby, but complementary therapy sessions also helped the parents relax and find ways of engaging with their baby through touch.

How you can help...

www.tyhafan.org/donateor Text 'LIVE04 £5' to 70070 to make a £5 donation

new born referralsMulti sensory sessions and music therapy gave the parents and their other children opportunities to be a family with their new member. On-going emotional and practical support enabled the family to consider end of life care options and make choices about where and how this could be managed.

Ten days after arriving at the hospice the family returned home with their new baby, an event that a week before had seemed an impossible dream.

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Outreach support from Ty Hafan continued after the family went home and support was co-ordinated with the community nurse.

Sadly the baby died a few months later but the family expressed their gratitude to Ty Hafan for giving them the time, space and confidence to be able to care for their very complex little boy and for enabling them all to be a complete family for those few months.

www.tyhafan.org


getting youngerSimilar to the majority of children’s hospices, the age of children and young people being referred to Ty Hafan ranges from birth to the age of 19.

Over the last two years not only has Ty Hafan seen a significant increase in the number of children being referred to us, the average age of those children has actually decreased, possibly due to the rise in neonatal cases.

When the hospice first opened in 1999 the average age of children using the service was around 11 years old. You will see from the table below that the average age has generally been declining since then with the current average being in the region of five years old.

Age 11

Age 9

Age 7

Age 8.5

Age 5

Age 5

Age 5

Age 5

Age 6

Age 6.5

Age 7

Age 7

Age 7

Age 12

Age 10

Age 2

Age 8

Age 0

Age 6

Age 4

Jan

1999

Jan

2000

Jan

2004

Jan

2008

Jan

2001

Jan

2005

Jan

2009

Jan

2002

Jan

2006

Jan

2010

Jan

2003

Jan

2007

Jan

2011

getting youngerThis of course means that the care and support provided to those children and their families is likely to extend over a longer period of time, necessitating the need for increased and sustained funding.

7www.tyhafan.org

You can help...by giving a regular monthly gift to these families. Simply use the form in the centre of this newsletter. We'd love to hear from you!

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west almost equals eastDue to the hard work of our two Palliative Care nurses, Linda Bishop and Sara Jones the word of Ty Hafan continues to spread further into Wales resulting in more and more children, young people and their families being referred from areas west and north of Swansea.

Areas where our families come from (this includes bereaved families who are still receiving our support)...

Local to hospiceValleysEastWestPowys

providing care, being there

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west almost equals east

Local to hospiceValleysEastWestPowys

Ty Hafan’s new hydrotherapy pool is now underway.

It will replace the old Jacuzzi and allow families and staff to enjoy the fellowship and therapy together, so important for the care and support of the children.

The Jacuzzi room is to be extended outwards towards the sea with the new rectangular pool enclosed in a purpose built extension. The new building will have full length windows

towards the sea and incorporate private changing facilities and a shower. The new pool will be fully equipped with state of the art sensory equipment for sound and vision experiences. Projected images on the walls, starry sky at night, bubble columns and lights which change with the music beat to name a few. The room can be blacked out to provide dimmed lighting if needed.

The construction started on 2 July and the pool will be completed on 5 November 2012 in time for a Christmas dip! A special thank you must go to all the supporters who have given

so much to enable this to happen – without them none of this

would be possible.

our new hydrotherapy pool


When the staff at Ty Hafan welcomed the first children and families to the hospice in January 1999 little did they know that they would have a future paralympian to stay.

In March 2007 Hayley from the family support team visited a family living in Narberth whose eleven year old son Jacob was becoming less and less mobile due to his condition, Duchenne Muscular Dystrophy.

"It was obvious at that time that they were all coping extremely well" added Hayley "and I could see that they didn’t need short break care at that time. However as Jacob’s condition began to deteriorate about three years later they came to stay at the hospice, thoroughly enjoying the relaxing environment which gave them the opportunity to spend quality time as a family".

In January 2011 Jacob became very ill and was airlifted to the Birmingham Queen Elizabeth hospital with diagnosed liver and kidney failure. It was a distressing and exhausting time for all the family and Hayley did what she could to support them during this difficult time.

When Jacob began to recover he couldn’t wait to get back into training for his favourite sport *Boccia and he and the whole family spent many a weekend away at training camps all over the UK.

our ty hafan olympic hero

*www.gb-boccia.org

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In April of this year Jacob learned that he had made Team GB for the Paralympics 2012.

To say that Hayley and the rest of the staff at Ty Hafan are very proud of Jacob and all that he has achieved is an understatement.

Well done Jacob!

Other Olympic connections

With Olympic fever having gripped the world throughout August, Ty Hafan is proud to have its claim to Olympic fame through other associations.Lovely volunteer Lyn Hull was chosen to run with the Olympic torch through the streets of Cardiff while seventeen year old Amy-Claire Davies, who comes to stay at the hospice from time to time, took hers through the streets of Swansea.

Pictured: Left: Jacob, our Olympic hero!Middle and right: Lyn and Amy-Claire enjoying the experience.

www.tyhafan.org


Ty Hafan steps in to care for Poppy – while Alan Titchmarsh works his magic.

When Rachel and Rob Jones and their family from Crickhowell were referred to Ty Hafan, little did they know the part the family hospice for young lives would eventually play in the transformation of their garden!

Their seven year old daughter Poppy was born very prematurely and as a result suffers from cerebral palsy and chronic lung disease. She has many complex needs and requires round the clock supervision.

The family became aware of Ty Hafan in October 2011 and have since had a couple of stays at the hospice to help recharge their batteries and also to allow them to have quality time with Poppy’s siblings, Alfie (9), Charlie (12), Sam (16) and Isabel (18).

So when Rachel and Rob and their family of five were asked to temporarily vacate their home for a few days it provided something of a problem.

They had been approached to allow their garden to be used in a television 'pilot' project which meant that they had to move out of the house for a few days.

12 providing care, being there

the ty hafan and titchmarsh team

Little did they know that friends and family members had in fact nominated them to have a garden 'makeover' for the 'Love your Garden' programme, hosted by Alan Titchmarsh himself.

"Relocating a family of five was just about do-able" explained Rachel who also, works full-time as an A

& E nurse. "We were however at a loss to how we could find

somewhere to cater for Poppy’s needs.

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"It was a complete fluke that out of the blue we received a phone call from Ty Hafan asking if Poppy would like to go and stay at the hospice, so we were able take her there knowing she was getting the very best of care".

"Being part of the programme was really exciting and the garden was beautifully done especially with Poppy’s needs in mind".

The programme was screened on Wednesday 3 July on ITV.

Pictured: Poppy with brother Alfie at Ty Hafan and TV presenter Alan Titchmarsh.

www.tyhafan.org


on holiday with the pullensThe Pullen family enjoyed a holiday of a lifetime thanks to an amazing donation from a Penarth family.

Nine year old Rhys Pullen suffers from a life-limiting rare genetic chromosome abnormality and receives short break care at Ty Hafan.

The generous family, who wish to remain anonymous, donated the £5000 holiday to Fuerteventura to Ty Hafan after a last minute hitch meant they were unable to make it.

Following some quick work by family support worker Shirley Valentino, the Pullen’s from Cardiff were on a plane six days later to enjoy their first holiday together as a family. Mum Rhiannon, dad Richard, brother Ryan (15), sister Rebekka (13) and Rebekka’s best friend Lianna stayed at the five-star Hotel

Barcelo for two glorious weeks.

Shirley, whom the family call their 'guardian angel', said she has noticed a change in the family in the short time since their return. "We have many families like the Pullens, but I chose them to go on holiday because I knew it would be emotionally beneficial for them all, and of course Rhys. The pictures from the holiday speak a thousand words – you can see how happy they are."


www.tyhafan.org

Rhys’ mum Rhiannon said; "As a family we were going through a really tough time around Christmas. It was something we all needed. We can’t thank the family from Penarth enough for their generosity, and also Penarth Travel for helping make it all possible, and Ty Hafan and Shirley specifically for thinking of us.

"It was funny because that afternoon we were sitting in our garden enjoying a rare bit of sunshine and we were saying what would we do and where we would go on holiday if we won the lottery. It feels like we have!"

Pictured: The Pullen family in Fuerteventura.

Richard added "Shirley said "are your passports in date because you are going to Fuerteventura".

"I was shaking it was like a dream and six days later we were on a plane. We will always remember what the family has done for us; we are completely overwhelmed by it.

"That level of generosity is not the sort of thing you hear of, but they gave us precious memories we will treasure forever."

Rhiannon added "We have gained so much from this act of kindness. We really don’t know how to thank everybody. We just hope they realise how much their generosity and kindness has changed our lives."

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3 Increase your donation with the Gift Aid Scheme

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Please return this form to: Ty Hafan, Head Office, St Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff, CF5 6ES

Ty Hafan values your support and promises to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998). We will not disclose or share personal information supplied by you with any third party organisation without your consent. By providing your details, you will be indicating your consent for Ty Hafan to contact you by email, letter or by phone to inform you about future fundraising activities and appeals, unless you have indicated an objection to receiving such messages by ticking a box below.

I do not wish to be contacted by: email telephone post

For office use only ......................... (CWTA12)

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(if applicable) (last three digits on reverse of card)

nI am a UK taxpayer and I would like Ty Hafan to reclaim the tax on my donation through the Gift Aid Scheme (an extra 25p for every £1 donated). This declaration also relates to all donations I have made to Ty Hafan in the past four years and all donations I make hereafter until I notify you otherwise. For donations to qualify for Gift Aid you must pay income tax or capital gains tax equal

to the amount claimed in the tax year.

the difference you can make...

£5 a month (£60 a year) could pay for three hours’ care for a life-limited child or young person, giving mum and dad a break and allowing some precious time to be spent with their other children.

£10 a month (£120 a year) could pay for a session of music therapy at home, helping a life-limited child to express themselves, improve their co-ordination and relax.

£10

£5

We've made it even easier for you to make an instant difference to hundreds of Ty Hafan families. You can now set up a direct debit payment online to give a regular monthly gift:

www.tyhafan.org/monthlygift

Thank you! Your ongoing support is invaluable and helps to ensure our care services will be able to help families in Wales year after year.

Whilst we try hard to ensure your payment will go to the area of support that you have chosen, we may not always be able to allocate funds in this way due to over-subscription or demand. Any over-subscription or surplus from your gift, after all costs of your chosen area of support have been met, will be used for the charitable purposes of Ty Hafan and will be spent for the benefit of the children, young people and families using our care services. Please be assured every gift will continue our care provision programme and assist in making the lives of the children and young people as comfortable and enjoyable as possible.

the difference you can make... If two people gave £21 a month (£252 a year) this could pay for a week of 24-hour telephone support, meaning worried mums and dads could pick up the phone day or night to speak to someone.

We need just four people to give £41 a month (£492 a year) to give a family a whole weekend of short break care at our hospice. This includes all their accommodation, food and drink and 24 hour specialised nursing care for their life-limited child.

£21

£41

providing care, being there20 providing care, being there

Baseball Bowling Cricket Karate

Squash Polo Netball

Wordsearch guru Lewis has been busy again – this time with an “Olympic” themed puzzle for all you addicts to enjoy

L

N H S A U Q S P H

R

L E K A R A T E P

B

C A T E O G N 0 W

Q

0 H B B 0 H L Y H

H

K W B E A O Y P M

Y

T T L U S L V Y B

R

L Q N I V A L L 0

I

Z M H Y N R B S T

A

I T Y W P G L T E

C

R I C K E T X G H

BASEBALL BOWLING CRICKET KARATE

SQUASH POLO NETBALL

Wordsearch guru Lewis has been busy again – this time with an 'Olympic' themed puzzle for all you addicts to enjoy!

Check out the artwork of some of the children who stay at Ty Hafan which is on display in Caffi Barics in Barrack Lane in Cardiff. (Just outside John Lewis Car Park).

The café is owned by housing association Linc Cymru who are running is as a non-profit making venture so their prices are very reasonable.

Most of the pictures displayed have been produced during Art Club which is held in the hospice most Tuesday afternoons. Some of them are

produced in a number of innovative ways for instance by squirting paint on to a piece of paper in a tray and rolling marbles around.

A similar effect is achieved, albeit on a larger scale, by driving wheelchairs through blobs of paint on a large sheet. You can see that it produces some quite stunning contemporary art!

Drop in for a coffee at Caffi Barics sometime and take a look.

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wheelchair art

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cwtch cornerFollow us on Twitter and help us spread the word.

www.twitter.com/tyhafan

this is how

it's done...

"Like" us on Facebook and post a message on our wall. We'd love to hear from you!

www.tyhafan.org/facebook


wheelchair art!

23www.tyhafan.org

cwtch cornerFollow us on Twitter and help us spread the word.

www.twitter.com/tyhafan


The insurers 70’s style fundraisers at Thomas, Carroll are on a mission for Ty Hafan in their 40th anniversary year and have pledged to raise £40,000.

A fantastic £30,664 has been raised so far through fundraising activities and events.

A big thank you to the insurers.

Plunge into the eerie and ancient darkness of Dan yr Ogof Showcaves this Halloween and mingle with a terrifying medley of ghouls, ghosts, vampires and wicked witches for a cave walk you'll never forget!

Ty Hafan and the Duke of Edinburgh’s Award are working together to bring you this unique event.

For more information and to register now… www.tyhafan.org/halloween

the insurers

coming up…halloween cave caper

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For the second year, Dow Corning organised a fantastic fun day in aid of Ty Hafan.

Crafts and activities kept everyone busy including bouncy castles, face painting and circus shows. Experts were also on hand offering falconry, angling and racing car experiences.

A big thank you to all those involved in making this day a great success!

dow corning fun day

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please can you help? Are you able to commit some of your spare time to volunteer at

Ty Hafan or perhaps become an ambassador?For more information contact Diane Stringer on

029 2067 2080 or email [email protected].

ken the king needs you!Ken Davies our collection box king is in desperate need of some help. If you can spare a couple of hours a week in your local area, picking

up full collection boxes and replacing them – then please let Ken know on 07917 847540 or email [email protected]

Our collection boxes are a really good source of income for Ty Hafan – it all helps!

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Ty Hafan shops beat the gloomy weather by entering into an 'Olympic' window competition. All 20 shops created Olympic-themed window displays, which remained proudly on display for the week of the Olympic opening ceremony.

Justin Horton, Retail General Manager commented that the standard of entries was very impressive; "it was an incredible week. Everyone entered into the spirit of the competition and had a lot of fun creating some brilliant window displays. It was great to see staff and volunteers making such a huge effort".

The team at Caerphilly won the competition with a stunning gold, silver and bronze window. In second place were the team (including local school kids) at Penarth for their teddy bear Olympics and in third place were the Merthyr team with their eye catching patriotic window. When done to all of the entrants!

retail window competition


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97% of stock sold at Ty Hafan shops is generously donated by members of the public.

Competition from other charities and ‘buy a bag’ textile merchants is intense at the moment. Our shops really need as much donated stock as possible in order to provide customers with a great choice.

Well not quite yet, but Ty Hafan has launched its brand new range of 2012 Christmas cards. The range features a specially designed Ty Hafan brooch by Carrie Elspeth of Cowbridge. Show your support by purchasing one as a treat for yourself or as a treasured gift. Ordering details can be found within the enclosed brochure, or by phoning 01446 721544.

If you are able, please take any 'once loved' items to your local Ty Hafan shop; they will be very much appreciated. If you live within Cardiff, Caerphilly or the Vale of Glamorgan we can even pick them up - just give us a call 01446 721544.

p.s. don’t forget to sign up for Gift Aid when you donate so that Ty Hafan can receive an extra 25% from the tax man!

help your local shop, have a clear out

it's christmas

for your welsh copy please visit www.tyhafan.org/lets-cwtch


Crackerjackpot is going online with our very own website.

You can now pay and play online, keep up to date with the latest news, winning numbers and join in our 'crack a smile' appeal. Existing members can top up their account, check their play history and amend their details in the 'my account’'section.

Visit www.lottery.tyhafan.org to see for yourself.

Rollover newsFor the second time in its history the Crackerjackpot rollover reached its maximum of £12,000. Our lucky winner wants to remain anonymous but was overwhelmed with their prize and very generously gave Ty Hafan a substantial donation from their winnings.

Summer Raffle FunIt was all go in the lottery office on 10 July when we held our summer raffle draw. The lucky 1st prize ticket was number 0016622 – full winners details can be found on our website www.tyhafan.org/summer-raffle

Pictured: Our independent adjudicator Lisa Morgan and Kate Innes Lottery General Manager carrying out the raffle draw.

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We would like to say a big thank you to each and every one of our

lottery members. Your support has raised over £1 million for Ty Hafan in the last year and is a vital source of reliable income

enabling us to provide our unique service for free to the families in

Wales that need us.

Mrs Dorothy Davies and her husband Mr Ronald Davies MBE from Skewen (pictured bottom right) both remembered Ty Hafan in their Wills. Dot and Ron, as they were known by family and friends, made gifts to their loved ones first and then remembered Ty Hafan. It really is easy to include a gift to Ty Hafan in your Will and any amount will make such a difference. If you wish to find out more information about including a gift in your Will, contact our Legacy Officer Clare Waters on 029 2067 2056 or by email [email protected].

Please remember Ty Hafan in your Will once you have taken care of family and friends

We asked Shelley Jones, Solicitor specialising in Wills and Probate at Le Gros Solicitors LLP Cardiff:

Why is it so important that I have a Will? I don’t think I am particularly wealthy so wonder if I need to bother.Everyone should consider making a Will no matter how much money they have. Without a Will,

the rules of intestacy will dictate who will manage your estate and who will inherit your assets – they could be elderly or simply unreliable and loved ones and charities can miss out.

If you are married or in a civil partnership, your spouse or civil partner will not necessarily inherit your whole estate – this will depend on how big your estate is and which of your blood relatives survive you. If you are unmarried but living with a partner, your partner may be left with nothing unless you have made a Will. A Will can state who is to care for your children and make gifts of personal items such as a piece of jewellery or a watch to someone important to you.By making a Will, you can appoint people you can trust to carry out your wishes and ensure that what assets you have go to those you want to have them.

do you have the will to help?

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In May 2012, we tried to find 500 ladies to take part in the diamond jubilee themed Midnight Sleep Walk… we not only found 500… we found an amazing 700 ladies!

They were all willing to give up a nights' sleep to help as many Ty Hafan mums as possible get the good night’s sleep they really deserve.

Ty Hafan supporter John Barrowman certainly helped bring in the registrations and also entertained the ladies before the sponsored walk which has raised an amazing £50,000 so far.

Huge thanks to John and all the gorgeous ladies!

On Saturday 23 June, 75 teams took on the GE Aviation Wales Welsh3peaks Challenge.

Amongst them were four dads; Sean Ward, Andrew Davies, Anthony Boggis and Hywel Tyler who all spend time, with their families at Ty Hafan.

Ty Hafan care workers, Paul and Dan completed the team as drivers. Paul commented "The team spirit was tremendous, I think it was especially beneficial for the dads to be part of the event as a team".

Although poor weather conditions made the challenge tougher than ever, it is expected to raise over £100,000.

the event round up!


It ’s official! The Virgin Islands have won the 'Olympics', or rather the Ty Hafan 'Olympic' themed It’s a Knockout, which was held at the South Wales Police Sports Ground in Bridgend on Saturday 21 July.

After weeks of rain the sun came out as the teams battled it out on the human football table, slip and slide elephants and the great wall of sponges!

Congratulations to our winners!Gold – Virgin Islands (South Wales Fire and Rescue Squad – Whitchurch, Cardiff) Silver – Greece (Barclays) Bronze – Mexico (Castleoak)

Our first sponsored dog walk was grrreat with almost 100 walkers and their hounds joining us for a 3.5 mile walk around the beautiful Margam Country Park on 5 August.

Fancy being one of the first to climb the tallest building in Wales?

Be a step above the rest this November; climb the tallest building in Wales and raise money for the families who rely on our support. These families need your help, and each step you take will go towards supporting them along their unimaginable journey.

Standing at 29 storeys and 107 metres high, Meridian tower is the tallest building in Wales. Sunday 18 November will present a challenge to the fittest of the fit – who never take the lift! Find out more at... www.tyhafan.org/urbanheights

www.tyhafan.org Ty Hafan - the family hospice for young lives. St. Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES Tel: 029 2067 2060 Fax: 029 2067 2061 Registered Charity No: 1047912. Ty Hafan® is a registered trade mark. (aug12)

ty hafan events 2012-13sunday 18 november 2012 urban heights stair climb

Climb the tallest tower in Wales!

january 2013 chefs night out A hugely popular event - now in it's third year.

february 2013

new event (watch this space!) Keep checking www.tyhafan.org/events for further details.

march 2013

do you dare?

Multi-activity physical challenge with a twist...

may 2013

midnight sleep walk

Starting from the Millennium Stadium at midnight.

june 2013

welsh3peaks challenge

Climb the three highest mountains in north, mid and south Wales in just 15 hours.

september 2013

taff trail cycle challenge A 55 mile or 28 mile bike challenge from Brecon or Merthyr to Cardiff Bay.

For more

details and to

register your interest

in these events visit...

www.tyhafan.org/

events

Documents

Ty Hafan Cwtch