Sarcoma UK

@sarcoma.org.uk

NICE has provisionally recommended nirogacestat for progressing desmoid tumours. If confirmed, it will become the first specifically approved treatment available to eligible NHS patients in England. Sarcoma UK and Desmoid Aid UK submitted evidence together. Read more: sarcoma.org.uk/news

Nirogacestat provisionally recommended by NICE. Text over a background of white tablets, with the Sarcoma UK and Desmoid Aid UK logos at the bottom.

A huge thank you to Chris, who completed an Ironman 70.3 in support of Sarcoma UK, raising money and awareness in memory of his wife, Laura, who died from sarcoma in April 2023. After a slipped disc earlier this year, reaching the start line made the achievement even more special.

Chris Whellams, in a Sarcoma UK tri-suit, punches the air as he crosses the finish line at IRONMAN 70.3 Weymouth, with crowds cheering on both sides.

The Support Line is closed tomorrow while the team attend a business planning day. If you need urgent support, contact your specialist team; Macmillan Cancer Support on 0808 808 0000 or by chat 8 am-8 pm, 7 days a week, or Samaritans on 116123 at any time. We'll be back on Friday from 10am.

Phone lock screen showing a text message: 'Sarcoma UK Support Line closed tomorrow.' Below the phone: 'We'll be back Friday 10am-3pm.' Sarcoma UK logo top right.

VAT on compassionate access medicines has been raised again in Parliament. Danny Beales MP highlighted Sarcoma UK cases where people with sarcoma have been unable to access medicines previously provided free of charge. The Government has paused VAT while it works on a permanent solution.

There’s still time to vote in the Sarcoma UK 2026 Shining Star Awards. Who will you vote for? ⭐️Gaz Emmerson Fundraiser of the Year ⭐️Group Fund Champion(s) of the Year ⭐️Young Sarcoma Voice of the Year You decide. Vote for your star: sarcoma.org.uk/VOTE

‘Shining Star Awards. Who will be your star?’

Our Support Line is here for you. 💙 Whether you’ve been diagnosed with sarcoma, are supporting someone, or have questions, our team is here to help. ☎️ 0808 801 0401 📧 supportline@sarcoma.org.uk 💬 07534 177861 💻 Or leave your details via our new website widget: sarcoma.org.uk/supportline

sarcoma.org.uk/supportline

Join the Glitter Ball Committee ✨ Meet a supportive community, share your ideas and help shape one of Sarcoma UK’s biggest events. We’re looking for three people. The committee meets online for around one hour a month. Contact Kerry by 15 September: kerry.reeves-kneip@sarcoma.org.uk

A group of women celebrate together on a dance floor, arms raised and smiling, with band members visible behind them. A gold glitter ring frames bold gold text: "Join the Glitter Ball Committee". The Glitter Ball and Sarcoma UK logos appear bottom right.

Writing a will doesn’t have to be a big job. This Autumn, we’ve teamed up with Octopus Legacy to make it simple and free, with costs covered up to £150. Start your will online, by phone, at home or in-branch: sarcoma.org.uk/OctopusLegac... You can also choose to leave a gift to Sarcoma UK.

Teal graphic with "Change starts with a will" heading. Text reads: "A gift in your will can help fund vital research and provide information and support for people affected by sarcoma. Write or update your will for free today." Arrow points to Octopus Legacy and Sarcoma UK logos at bottom.

🐝 Manchester, we’re coming back! Rare But Real returns to Heaton Park on Sunday 27 September. Bring your family, friends or four-legged companion and choose the route that suits you, from a relaxed, accessible walk to our 10km loop. rarebutreal.org.uk/

Group of eight participants wearing blue "Rare But Real" t-shirts with race bibs, smiling outdoors on grass with trees in the background. "Rare But Real" logo at top. Text reads "Manchester, 27 September."

You don’t have to be an event planner to join our Glitter Ball Committee. 💙✨ We’re looking for three people with ideas, enthusiasm and a fresh perspective to help make the event a success. Just one online meeting a month. Interested? Apply by 15 September: kerry.reeves-kneip@sarcoma.org.uk

Four smiling women in evening wear at an event, wearing teal Sarcoma UK sashes, one reading "Staff." Black background with gold glitter effect below. Text overlay: "Could you help shape the Glitter Ball?"

Congratulations to Catherine, who walked from Wigan to the Clatterbridge Cancer Centre in Liverpool, raising nearly £3,000 for Sarcoma UK. 💙 It’s a journey she and her husband, Adam, have made many times during his sarcoma treatment, making this challenge especially meaningful.

Catherine, wearing a blue Sarcoma UK vest and backpack, hugs her husband outside the Main Reception entrance of The Clatterbridge Cancer Centre. She is smiling warmly.

🎵 “The puzzle of who I am is still not complete.” The Puzzle by Abby Daniels is out now. Written after her osteosarcoma diagnosis, it reflects how Abby’s life changed. Abby died in July 2026, aged 26, and wanted the song released in aid of Sarcoma UK. 💙 Listen: youtube.com/watch

The Puzzle

Provided to YouTube by DistroKid The Puzzle · Abby Daniels · Abby Daniels · David Wilson · Jamie Aspden The Puzzle ℗ 13491855 Records DK Released on: 2026-08-18 Auto-generated by YouTube.

youtube.com

Clare transformed an old Art Nouveau chair from her shed for Michael Pinsky: The Final Bid at MAC Birmingham. Restored and reupholstered by hand in orange Harris Tweed, every bid on The William Frances Art Nouveau Chair – FB47 will raise money for Sarcoma UK. 💙 macbirmingham.co.uk/

Restored wooden chair with bright orange upholstery against a teal wall, on a dark blue background with circular line graphics. Text overlay: "This chair is raising money for Sarcoma UK."Split image on teal background. Top left: a broken, rusted chair frame outdoors near a shed. Bottom right: the same chair restored, with orange upholstery. Text overlay: "From a chair in a shed... To a restored Art Nouveau Chair.Four photos showing chair restoration steps: the frame held together with clamps, the woven seat base rebuilt, the frame with coir seat padding added, and the finished chair with carved wooden back and orange upholstered seat.Gallery interior with dozens of decorated chairs suspended by strings from ceiling rigging, visitors viewing the display. Text overlay: "Now, it's part of the 'Final Bid' art exhibition."

A huge congratulations to Scott and Max for completing their Ironman challenges for Sarcoma UK! 🏊‍♂️🚴‍♂️🏃‍♂️ Inspired by Felicity, who was recently diagnosed with skull base chondrosarcoma, they’ve already raised over £4,000 to support people affected by sarcoma.

Two men, Scott and Max, stand smiling on stone steps in front of a tall stone monument, wearing blue Sarcoma UK T-shirts and holding Ironman finisher medals, with flags and trees in the background.

Help make our next Glitter Ball one to remember ✨ We’re looking for three people to join the Sarcoma UK Glitter Ball Committee. No event-planning experience needed, just enthusiasm and ideas. Email kerry.reeves-kneip@sarcoma.org.uk by 15 September

Guests at a formal gala dinner, one holding up a "Bid" paddle. Centred gold glitter circle on black reads "Join the Glitter Ball Committee." Glitter Ball and Sarcoma UK logos, bottom right.

After Mark's sarcoma diagnosis, his friend Chris drove 150 miles to take him to hospital appointments. Now Mark is cancer-free, they’re cycling around 1,000 miles from Land’s End to John O’Groats in nine days for Sarcoma UK. 🚴‍♂️ Read more: sarcoma.org.uk/news

Chris and Mark, wearing cycling gear and helmets, smiling behind a black metal railing outside houses. Chris (left) in a white helmet and black jacket, Mark (right) in a grey helmet and green Rapha jacket, resting on the fence in the rain.