£1,000 Donation to the Cleft Lip & Palate Association (CLAPA)

The Ten Percent Foundation recently donated £1,000 to the Cleft Lip & Palate Association (CLAPA).

The Ten Percent Foundation recently donated £1,000 to CLAPA. The charity were nominated by Madhavi Seshu, a cleft consultant at Alder Hey Hospital. Madhavi sent a note to say: “can I nominate CLAPA , the cleft lip and palate association, which is a small national cleft charity which works with children and adults with a cleft in the UK. Their main focus is working with the families and they liaise with the clinicians and researchers in the UK as well. My work with them involves health inequalities in access to dental care for children with a cleft which is a frustrating problem for parents. They do events for families with a cleft like school changeover days, residential weekends, provide free feeding bottles for babies with a cleft, counselling and mentoring services and much more. They work with all the NHS cleft units in the UK.”

We made contact with CLAPA and received more information from Mikaela Conlin-Hulme, Head of Income at the charity.

Donation Expenditure

CLAPA is seeking support for core running costs for the 2025–2026 financial year, any donation—such as your grants—would help cover vital services including provision of specialist feeding equipment for newborns, online and in-person support groups for children, adults, and families, peer-to-peer support and counseling, community engagement events and residential weekends for young people, collaboration with NHS Cleft Teams to improve care and access. A donation would meaningfully contribute to these activities as part of CLAPA’s wider mission to support the cleft community throughout the UK.

Formed in 1979 as a partnership between parents and health professionals, CLAPA supports people of all ages by helping them to take control of their treatment journey, connect with others and use their voice to impact the future of care. We are there from the moment of diagnosis with reassurance, information, and a welcoming community for families, children and adults born with a cleft. Cleft is a condition that can affect people throughout their entire lives, and our purpose is ensuring no one goes through this journey alone.

Designed to complement rather than replace vital NHS care, our services comprise:

Manufacturing and distributing special bottles and teats, which allow newborn babies with a cleft to come home from hospital and feed peacefully at home. Without these, babies with a cleft can struggle to feed properly and can fail to gain weight. CLAPA provides these free of charge to hundreds of new families each year, a service often described as ‘a lifeline’ by parents, carers, and specialist NHS nurses alike.

• Online support groups and events to help people to connect with others who share their experiences, including tailored sessions for young people, pre- and post-natal support, grandparents’ and Dads’ groups.
• Online forums supporting the cleft community 24/7, with 3662 people interacting each day.
• Trained peer volunteers giving one-on-one support to help people cope with the most difficult parts of their cleft journey, and counselling for those requiring psychological support.
• Adult Services, connecting them to others with comparable experiences and ensuring they can access the support they need. Also, an annual conference for adults affected by cleft.
• A variety of focus groups, to co-produce resources, services and strategy with the cleft community. Collaboration with the nine specialist NHS Cleft Services in the UK, supporting the involvement of affected people with research projects and other initiatives to improve care.

As well as this, CLAPA acts as a powerful voice and advocate for the UK cleft community, ensuring they have a place at the table whenever decisions are made about the future of cleft treatment and support.

Kate’s Story:

“My life wouldn’t be what it is if it wasn’t for CLAPA.” Kate, 38, found out her son Harry would be born with a cleft lip at her 20-week scan. Newly married, she and her husband Adrian were devastated. “I was already having a rough pregnancy, with gestational diabetes and high Down’s Syndrome scores. The news of Harry’s cleft was a bolt out of the blue. We found out the week after our wedding, and that was the end of our honeymoon phase.” Kate had little knowledge of cleft lip and palate. “I knew Joaquin Phoenix had a cleft lip, but that was about it. We didn’t want to Google it, because that’s the worst thing you can do.”

Her NHS cleft nurse introduced her to CLAPA. At first hesitant, Kate found comfort in CLAPA’s resources and Facebook group. “At first, I called living with cleft ‘being in a bubble’. You think you’re the only one in the world. But then I learned more from CLAPA, and I couldn’t believe I didn’t know about cleft as a pregnant woman.” Kate and Adrian joined a CLAPA antenatal support group, which became a turning point. “It was amazing—everyone shared the same fears I had. It was such a lightbulb moment. I realised, ‘I’m not going crazy. I’m not doing anything wrong.’”

Harry was born prematurely at 34 weeks with a unilateral cleft lip. “There was still trouble with feeding, and he had silent reflux, but we were lucky in the grand scheme of things.” Kate used CLAPA’s feeding bottle service and parent support groups.

“All the groups were brilliant. The baby signing sessions and support networks were invaluable.” After Harry’s cleft repair, Kate accessed CLAPA’s counselling service. “It helped me so much. It’s definitely a grieving process—first, for the pregnancy you thought you’d have, then again when surgery changes your baby’s face. It took me weeks to get used to Harry’s forever smile, but much longer to stop grieving his birth smile. My counsellor was a huge part of that journey.” During Harry’s surgery, CLAPA’s Facebook group was a lifeline. “Knowing I could message other parents at any time got me through. Even on the day of Harry’s operation, they were there to support me. Without the CLAPA community, I wouldn’t have got through the last two and a half years.”

Kate’s mum also found support through CLAPA’s grandparent Coffee Club, and CLAPA helped Kate explain cleft to her 13-year-old daughter using the Callie and her Cleft book. So grateful for the support, Kate became a CLAPA volunteer when Harry was just four months old. She now helps run online antenatal support groups, meets local fundraisers, shares her story with medical professionals, and even sits on CLAPA’s staff and trustee interview panels. “I see parents at the end of support groups with a little less worry in their eyes— just like me that first time. Every chance I get, I shout about cleft and CLAPA. I can say to others, ‘It will be okay, CLAPA can help support you.’”

Funding

• Community fundraising (e.g. challenges and awareness weeks)
• Individual giving including direct debt donations.
• Multiyear Trusts and foundation support (e.g. Big Lottery, Smile Train and Garfield Weston funding pots)
• Corporate partnerships
• Merchandise and feeding equipment sales

What are some of the biggest challenges your charity has faced or is currently facing

The biggest challenges we face are:

• The changes in NHS England being closed and the impact on cleft care.
• Reaching underserved populations (e.g., people with invisible clefts, adults, ethnic minorities)
• High service demand amid rising costs. The need for advocacy for cleft related challenges such as access to good dental care.

• 1 in 700 babies in the UK is born with a cleft lip/palate, that’s 3 babies a day!
• CLAPA’s feeding bottles are described as “lifesaving” by NHS staff and parents
• Our online forums average 3,662 active users daily
• Our social media reaches 2.2 million people annually

CLAPA employs: 23 staff across 16.7 FTE positions • Numerous volunteers supporting peer networks, mentoring, and fundraising

Cleft Lip and Palate Association (CLAPA) Telephone: 020 7833 4883 Office: CLAPA, The Green House, 244-254 Cambridge Heath Road, LONDON, E2 9DA

For further details about CLAPA please visit https://www.clapa.com/