Latest news
Charity of the year updates - Institute of Chartered Accountants in England & Wales (ICAEW)
Many thanks to Leighton Reed of Bloomfield Alexander for putting us forward for charity of the year in his role as President of the ICAEW. The ICAEW has provided us fantastic support in the first period, hosting two charity events which have raised a fantastic £4,645 so far. In September our trustee Paula Hansen attended a golf dinner, where attendees donated £851.
The most recent event, held at the spectacular Cardiff City hall raised an impressive £3,794. The event was attended by the inspirational Dame Kelly Holmes who talked about the importance of working hard to achieve your goals, something we strive to do as trustees of the charity, but more importantly, our members, the children and adults who are working hard
every day to grow strong and be the best they can be.
The most recent event, held at the spectacular Cardiff City hall raised an impressive £3,794. The event was attended by the inspirational Dame Kelly Holmes who talked about the importance of working hard to achieve your goals, something we strive to do as trustees of the charity, but more importantly, our members, the children and adults who are working hard
every day to grow strong and be the best they can be.
Running for success
Well done to our London Marathon runner Gareth who, after training hard raised a massive £1,800. Thank for your continued support and for all those who donated. Also thank you to Gavin and Nathan for their fantastic efforts in the Cardiff Half Marathon 2016 dressed as Batman and Robin.
Funding provision. Don't miss out.
In June 2016 we gave out our first grant for therapy and since then we have provided funding of £2564. Every family can apply once per year and applications are not means tested. We only ask that you fill in a follow up survey so that we can show how our funds are helping.
Applying is easy. Please go to the Apply for Funds tab for more information. A number of providers are already registered with us and you can find information on the Resources tab under Aftercare Information. If the provider you are using is not yet registered, they will need to complete Part C of your application as a one off exercise with annual reviews in case of changing information. As part of our due diligence, we will require certain documentation from them to show we are sending funds to legitimate organisations Our first Welsh-NHS funded SDR operation!We are only a few months into 2015 and already there have been several articles about SDR in Welsh newspapers and a feature on ITV news. Our first Welsh child, Imogen Ashwell Rice, is recovering after having her SDR surgery funded by the Welsh NHS in Bristol on 12 January. Other children who have not yet secured, or have been denied, funding have also featured in articles. See our NEWS page for the latest announcement about the Welsh NHS starting to fund SDR for Wales-based children as part of an commissioning study. There is still more work to do to clarify the referrals process and we are working with the NHS on this.
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Survey of NHS physio provision in the UKSupport4SDR Wales teamed up with Support4SDR in England to launch a survey of ALL families of children who have CP, and not just those eligible for SDR. The survey asks about how much physio children are getting funded by the NHS, how much they are paying for privately and whether this has changed in the last 5 years. The survey is anonymous but we are collecting postcode prefixes so we can look at how the responses vary across the UK. The survey is closed now and we are analysing the responses.
NEWS - funding released for 2015/1622 June 2015: The Welsh Government released a further sum of money today to be spent on SDR surgeries and post-op physio in 2015/16. £20,000 has been earmarked to cover around 8 or 9 surgeries and in-patient stays at Bristol or Liverpool and the costs of physio afterwards. If you know someone who might benefit from SDR then do get in touch because Support4SDR Wales can assist by helping to make contact with the Welsh Health Specialised Services Committee (WHSSC). This is the body which is coordinating the 2-year trial in Wales.If we can help please contact us HERE or complete a form HERE allowing us to pass on your details.
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SDR Party 2015
This year we held our SDR party at the Holiday Inn in Newport, and it was bigger and better than last year! We welcomed around 40 families and our special guests were two neurosurgeons - Dr Park from St Louis and Dr Pople from Bristol Royal Hospital for Children. With fantastic frozen-themed entertainment and a great disco, it was truly amazing to watch our incredible children and their siblings getting to know each other and having so much fun. Huge thanks to Louise Ponting who took some lovely photos that we have loaded in our gallery HERE
Support4SDR Wales holds its first AGM
Our AGM meeting was held at 3.30pm just before the SDR Wales party at the Holiday Inn in Newport. Although many of our families were in the hotel getting ready only two made it to the meeting! You can read the minutes of our meeting here, and also see a copy of our financial report for the years 2013-14.
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| s4sdr_accounts_2013_-_2014-2.pdf |
Evie walks for her sister
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We are so proud of little Evie Harrington, who completed a 1 mile walk in her frame to help raise money for her older sister Emilie to have SDR. And she has raised almost £3000! Evie had SDR a couple of years ago in St Louis and has slowly built her strength so now she can walk a mile in her frame! Emilie is 8 and has mild cerebral palsy so would not be eligible for the NHS funding, so, having already raised money for Evie to have her SDR, now they are starting all over again.
Here's a picture of Evie, with walked with her best friend Maya from Scotland, who had SDR at the same time, and also completed the 1 mile walk. It is a huge achievement and brings a tear to our eyes! To help Emilie please visit see her fundraising page HERE |
SDR surgeries to be funded by the Welsh NHS!
We have held several meetings with the Welsh Health Specialised Services Committee (WHSSC) in recent months and now have the following announcement to make:
If you are interested in finding out more, and would like Support4SDR Wales to follow up your application to WHSSC please complete the attached form or email us via the contact form and we will send you a copy.
- The Commissioning through Evaluation process for Selective Dorsal Rhizotomy, led by the English NHS began in July 2014. Details of this study can be found HERE
- The Joint Committee of the Welsh Health Boards met in September, considered a report by the Welsh Health Specialised Services Committee, and agreed to support the first phase of this study in Wales.
- £200k has been earmarked to fund this first phase within the financial year, with the expectation that further funding will also be released in the second year. This sum is based on the cost of the programme in England and the relative NHS funding formulae in England and Wales.
- NHS England has selected five Trusts across England to provide SDR and of these, the Welsh NHS has decided that patients will be referred to either Bristol Royal Hospital for Children or Alder Hey Children’s Hospital in Liverpool, depending on which is most convenient geographically.
- Plans are being finalised for clarifying the referral routes, and the allocation of funds for post-operative physiotherapy. These plans will be communicated with Paediatricians and other doctors who are likely to be involved in the referral process (for example neurologists and orthopaedic surgeons)
- We hope to be able to explain the referral process very soon.
If you are interested in finding out more, and would like Support4SDR Wales to follow up your application to WHSSC please complete the attached form or email us via the contact form and we will send you a copy.
Caudwell Children and Tree of Hope are to offer up to £5000 towards SDR costs at UK centres.
Caudwell Children and Tree of Hope have today announced a new partnership aimed at funding the Selective Dorsal Rhizotomy (SDR) treatment for children with cerebral palsy; an operation that can dramatically reducespasticity and enable children to walk unaided for the first time.
Trudi Beswick, Chief Executive at Caudwell Children, said: “SDR is a truly life-changing treatment and both charities have been instrumental in helping families from across the UK access the operation, both here and in America where the procedure was first developed. From our fundraising in this field, Caudwell Children has been able to open up a limited fund to support families looking to self-fund the treatment and we are delighted to be working with the team at Tree of Hope to identify those families who can benefit from this funding.”
Following a recent announcement from NHS England, SDR has been made available to UK patients through a scheme entitled ‘Commissioning through Evaluation’, but restrictions on the age and type of cerebral palsy means that some eligible candidates for the treatment will not be able to access NHS funding.
“The introduction of SDR to the NHS is a huge step forward in making this operation more widely available, but at present there are still patients who would benefit from SDR who will have to pay for it themselves, and as long as that is the case we will be here to help. By releasing this money to help pay for the operation, Caudwell Children are making it more accessible for those families who don’t meet the NHS commissioning criteria.” said Jeremy Marris, Chief Executive of Tree of Hope.
Families fundraising for SDR can apply for up to £5,000 towards the treatment costs which will be paid directly to the hospital undertaking the procedure. The limited fund will be allocated on a first come, first served basis.
Both charities have been instrumental in supporting families across the country seeking to fund the operation, which can cost up to £30,000, and will actively seek candidates for the new funding over the coming months.
For more information on the two charities and how they can help visit www.caudwellchildren.com and www.treeofhope.org.uk or call 0845 300 1348.
Caudwell Children and Tree of Hope have today announced a new partnership aimed at funding the Selective Dorsal Rhizotomy (SDR) treatment for children with cerebral palsy; an operation that can dramatically reducespasticity and enable children to walk unaided for the first time.
Trudi Beswick, Chief Executive at Caudwell Children, said: “SDR is a truly life-changing treatment and both charities have been instrumental in helping families from across the UK access the operation, both here and in America where the procedure was first developed. From our fundraising in this field, Caudwell Children has been able to open up a limited fund to support families looking to self-fund the treatment and we are delighted to be working with the team at Tree of Hope to identify those families who can benefit from this funding.”
Following a recent announcement from NHS England, SDR has been made available to UK patients through a scheme entitled ‘Commissioning through Evaluation’, but restrictions on the age and type of cerebral palsy means that some eligible candidates for the treatment will not be able to access NHS funding.
“The introduction of SDR to the NHS is a huge step forward in making this operation more widely available, but at present there are still patients who would benefit from SDR who will have to pay for it themselves, and as long as that is the case we will be here to help. By releasing this money to help pay for the operation, Caudwell Children are making it more accessible for those families who don’t meet the NHS commissioning criteria.” said Jeremy Marris, Chief Executive of Tree of Hope.
Families fundraising for SDR can apply for up to £5,000 towards the treatment costs which will be paid directly to the hospital undertaking the procedure. The limited fund will be allocated on a first come, first served basis.
Both charities have been instrumental in supporting families across the country seeking to fund the operation, which can cost up to £30,000, and will actively seek candidates for the new funding over the coming months.
For more information on the two charities and how they can help visit www.caudwellchildren.com and www.treeofhope.org.uk or call 0845 300 1348.
Commissioning through Evaluation programme is announced in England.
On 17 July NHS England announced that 120 children per year, for what we understand is a two year study, will have SDR funded by the NHS at one of 5 centres in England. We have been assured that the Welsh NHS will fund a small number of additional patients through the same study and are awaiting further details of when this will start and how families can apply for their child to be considered.
See here for the NHS England press release
We've formed a team to run the Cardiff Half Marathon on Sunday 5 October. But we need more volunteers!
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SDR Party Cardiff 2014
Parents of children who have had SDR, including the Support4SDR Wales Trustees, organised Wales's first SDR party on Sunday 23 March. Dr Park and his wife Meeaeng, Deanna Walter, Jackie Bryce and Michael and Margaret Kenyon were visiting the UK from St Louis and joined us for the party in St David's Hotel, Cardiff Bay.
Over 35 children with cerebral palsy came with their parents and siblings, to party and celebrate together. Most have already had SDR in St Louis or Bristol, and some are preparing for it. The opportunity to see Dr Park again or meet him for the first time, and to meet with other families on the same SDR journey, is incredibly emotional and valuable for everyone. For our children, Dr Park is their biggest hero. He loves nothing better than meeting each one, dancing with them and praising them for their hard work and success!
PHOTOS......We now have our official photos in our SDR Party 2014 Gallery. We're really grateful to Cath's brother Matthew who took them all for us. We were also fortunate to have another fab photographer present from the Tree of Hope children's charity, who has created another album HERE
Of the 21 Wales-based children who have had SDR in St Louis, 19 were at the party. Since each family has raised more than £50k for the surgery this represents in excess of £1m fundraised with the help of generous family, friends and communities to allow these gorgeous children to achieve things that nobody previously thought was possible.
The party room was decorated with giant sweets and balloons, and the children each had a bag to fill with sweets from a cart. Welsh songs were ringing round the hotel foyer as everyone arrived, sung by Creigiau Cantorion and the children were entertained by the fabulous Simon Sparkles and then danced the rest of the night away. Special thanks are due to Shane Harries for donating the room.
During the evening we had a Powerpoint presentation on repeat, with photos of each child (sometimes before and after surgery, as shown in the first slide below), and quotes about what SDR has meant to them and their families.
Over 35 children with cerebral palsy came with their parents and siblings, to party and celebrate together. Most have already had SDR in St Louis or Bristol, and some are preparing for it. The opportunity to see Dr Park again or meet him for the first time, and to meet with other families on the same SDR journey, is incredibly emotional and valuable for everyone. For our children, Dr Park is their biggest hero. He loves nothing better than meeting each one, dancing with them and praising them for their hard work and success!
PHOTOS......We now have our official photos in our SDR Party 2014 Gallery. We're really grateful to Cath's brother Matthew who took them all for us. We were also fortunate to have another fab photographer present from the Tree of Hope children's charity, who has created another album HERE
Of the 21 Wales-based children who have had SDR in St Louis, 19 were at the party. Since each family has raised more than £50k for the surgery this represents in excess of £1m fundraised with the help of generous family, friends and communities to allow these gorgeous children to achieve things that nobody previously thought was possible.
The party room was decorated with giant sweets and balloons, and the children each had a bag to fill with sweets from a cart. Welsh songs were ringing round the hotel foyer as everyone arrived, sung by Creigiau Cantorion and the children were entertained by the fabulous Simon Sparkles and then danced the rest of the night away. Special thanks are due to Shane Harries for donating the room.
During the evening we had a Powerpoint presentation on repeat, with photos of each child (sometimes before and after surgery, as shown in the first slide below), and quotes about what SDR has meant to them and their families.
Our first professionals eventSupport4SDR Wales took the opportunity of Dr Park's first visit to Cardiff to ask him if to share insights from his 25 years carrying out SDR with our local healthcare professionals. He kindly agreed, and we sent out the invitations far and wide.
Around 40 physiotherapists, orthopaedic surgeons, paediatricians and a neurosurgeon and neurologist attended in their own time (on a Sunday afternoon) to hear a presentation from Dr Park and Deanna Walter, physiotherapist and centre coordinator at St Louis Children's Hospital. There was also an opportunity to ask questions. We video recorded the presentation and will post a link to it here very soon.... More information for healthcare professionals can be found HERE |
Cath speaks at the Royal College of GPs gala dinnerSupport4SDR Wales was chosen as one of the charities of the night at the Royal College of GPs Gala Dinner on Saturday 28 March. We received £400 from the raffle. One of our trustees GP Dr Claire Campbell nominated our charity for the evening's event, and our Chairperson, Cath Wilton, gave a speech to introduce our charity - generating lots of interest from organisations asking how they can support us further. Well done Cath and a huge thanks to the GPs who supported us so generously!
A perfect end to 2013. Charity status is now official
Support4SDR Wales is now officially a charity, registered in England and Wales under number 1155148. We are very positive for the coming year, but need all the help we can get. Over the next month we will be registering with Just Giving and setting up all the tools we need to make this year a success.
Watch out for posters, fundraising forms and other ways of helping out. If you are interested in becoming a trustee, please send a request via the contact form and we will send you an application form. It is very rewarding and great for your CV. Best wishes from the trustees for a happy and healthy 2014 |
