SOFT UK Half-Year Review 2026
Supporting Families, Raising Awareness and Making a Difference
As we reach the halfway point of 2026, we wanted to take a moment to reflect on the incredible progress we've made together as a community.
The first six months of the year have brought both challenges and opportunities, but through it all, the dedication of our families, volunteers, healthcare professionals, fundraisers, and supporters has enabled SOFT UK to continue providing vital support, information, advocacy, and connection to families affected by Trisomy 13, Trisomy 18, and related conditions.
Bringing Families Together
One of the highlights of the year so far has been our Family Days in England and Wales.
These special events brought together more than 20 families for a day of connection, support, and shared experiences. Families had the opportunity to meet others who understand their journey, reconnect with friends, remember children together, and create new memories in a safe and welcoming environment.
From guest speakers and family activities to remembrance moments and informal conversations, Family Days continue to play an important role in helping families feel supported and understood.
Expanding Awareness and Reach
Awareness remains at the heart of our mission, and we are incredibly proud of the impact our community has made this year.
So far in 2026, SOFT UK has reached an incredible 931,103 people through our website and social media platforms. Every post shared, story told, and conversation started helps increase understanding of Trisomy 13 and Trisomy 18 while ensuring more families know where to find support.
March also saw our most successful Trisomy Awareness Month to date, reaching 222,396 people in a single month. These numbers represent far more than statistics, they represent opportunities to educate, connect, and support families across the UK and beyond.
Strengthening Partnerships with Healthcare Professionals
Providing support to families starts with ensuring healthcare professionals have access to the right information and resources.
This year, members of the SOFT UK team attended the BJM Conference, speaking with midwives from across the UK and raising awareness of the support available to families following a trisomy diagnosis.
The event generated significant interest, leading to requests for resources, discussions around educational presentations and webinars, and new opportunities to collaborate with organisations supporting parents and families.
We also contributed to a webinar for Surrey Child and Family Health, focusing on the importance of hearing the parent's voice following a life-limiting diagnosis. Through the sharing of lived experiences and professional expertise, we continue to help healthcare teams better understand the realities faced by families within our community.
Investing in Better Resources
This year has also seen the launch of a range of newly designed resources for families and healthcare professionals.
Created to be both informative and compassionate, these materials help ensure that families receive accurate information and appropriate support when they need it most.
By continually improving our resources, we are strengthening our ability to support healthcare teams and improve the experience of families navigating diagnosis, treatment, and bereavement.
Celebrating Outstanding Contributions
Behind every family journey are individuals whose compassion and dedication make a lasting difference.
At this year's SOFT UK Annual Awards, we were proud to recognise two exceptional people whose commitment to supporting families embodies the values of our organisation.
Outstanding Clinical Care Award 2026
Dr Ahmed Khalil
Dr Khalil was recognised for his exceptional commitment to supporting families affected by trisomy diagnoses. His compassion, professionalism, and clinical excellence continue to make a profound difference during some of the most difficult moments families may face.
Outstanding Compassionate Support Award 2026
Emma Carter
Emma Carter, SOFT UK's Northern Ireland Representative, received this award in recognition of her unwavering support for families across Northern Ireland. Through her kindness, guidance, and dedication, Emma has become a source of comfort and understanding for countless families throughout their journeys.
We extend our heartfelt congratulations and gratitude to both recipients.
Growing Our Presence in Northern Ireland
Our work in Northern Ireland continues to grow and develop thanks to the outstanding efforts of Emma Carter, our Regional Engagement Officer.
Over the past six months, Emma has been building relationships with healthcare providers, attending professional meetings, raising awareness within the community, and ensuring local trusts have access to up-to-date information and resources.
She has also contributed to important discussions around healthcare developments, helping ensure that the voices and experiences of families affected by trisomy conditions are represented.
This work is helping more families access support when they need it most and strengthening SOFT UK's presence across the region.
Looking Ahead: Summer of Support
As we move into the second half of the year, our focus turns to the launch of our Summer of Support campaign.
Designed to bring our community together through simple and family-friendly fundraising activities, the campaign will help raise awareness, strengthen connections, and generate vital unrestricted funding for SOFT UK's services.
Like many charities, we face increasing financial pressures as costs continue to rise and grant funding becomes more competitive. Community fundraising plays a crucial role in helping us continue providing support, advocacy, information, family events, and safe spaces for families affected by Trisomy 13 and Trisomy 18.
Whether you're taking part in a challenge, hosting a coffee morning, organising a fundraiser, or making a donation, every contribution makes a real difference.
Thank You
As we reflect on the first half of 2026, we are reminded that none of this would be possible without the incredible people who make up the SOFT UK community.
Whether you've attended an event, volunteered your time, shared your family's story, supported another family, raised funds, or helped spread awareness, you have played an important role in helping us continue our mission.
Thank you for standing with us.
Together, we are supporting families, raising awareness, and making a difference every single day.
We look forward to sharing even more positive news and achievements with you in the months ahead.
