About us
Who we are
We are a parent and family-led, patient-centred charity registered in the UK, dedicated to supporting people affected by GRI gene disorders. Our mission stems from personal experience, as we understand the challenges of caring for a child or loved one with GRI disorders. This shared journey inspired us to unite and create a community that empowers and supports other families across the UK, all while advocating for the best treatments and cures for our children and family members.
As a small team of dedicated volunteers, we operate on a national level, reaching out to families in need of support and information. Our work is entirely funded by donations and grants, which enable us to continue our vital mission.
Our Work
We help children and adults across the UK living with GRI genetic disorders. We work to advance the search for cures and treatments for GRI diseases. As well as offering vital practical and emotional support to families touched by GRI disorders, giving hope and help during their journey.
OUR GOALS
What are we trying to do at GRI UK?
Raise awareness
Advocate for Research
Support and empower individuals and families
Build Community
Join our GRI UK community
Your support is crucial to our mission. Whether through donations, volunteering, or raising awareness, you can make a difference. Together, we can improve the lives of those affected by GRI gene disorders and move closer to finding a cure.
Join our facebook groupJoin our family support groupGRI around the world
We are fortunate to be part of a growing international network dedicated to supporting those affected by GRI gene disorders. Here are some of the main organisations and groups we know about.
If you know of any other organisations or support groups that should be included in this list, please let us know! Together, we can strengthen our global GRI family and ensure that no one has to face this journey alone.
GRI Facebook pages and Private groups:
Trustees
Alyson Koopman
- Co-Chair of Trustees
Alyson is mum to daughter Ada and son Evan and married to Jake. Evan is a beautiful and determined young man who was diagnosed with GRIN1 in 2018 when he was 8 years old.
Alyson brings over 20 years’ experience working in the non-profit sector as a Humanitarian Child Protection Advisor and has spent 2 years volunteering for her local carers association.
Alyson says “having Evan has been a whirlwind experience of parenting a child with devastating complex health and developmental issues. But 15 years in, I am determined to do something positive for the GRI community in the UK, to support other parents going through similar experiences, and help find a cure for Evan and other children like him”.
Jillian Hastings Ward MBE
- Co-Chair of Trustees
Jillian has 2 children, including Sam, who was the first child diagnosed with a GRIN1 gene disorder by NHS England.
Jillian is an experienced patient advocate, with professional experience in planning policy development, research and project management. She’s been active in the GRIN/GRI patient community since Sam’s diagnosis (2017) and was a founding Board Member of the CureGRIN Foundation. Jillian was also Chair of the Participant Panel at Genomics England for 7 years, and was recognised for this service to patients and families with an MBE in 2024.
Jillian says “Genomic medicine is helping to diagnose more people with GRI disorders every year. But what happens after diagnosis is even more important. GRI-UK is here to help families on this journey and to work with researchers and clinicians to improve our prospects for the future. I’m excited to be part of such a strong team of Trustees and looking forward to seeing what we can achieve together in the coming years.”
Toni Clarke
- Vice Chair of Trustees
Toni is a mother of 2. Her daughter, Solana, was diagnosed with GRIN2A just before she was 2yrs old in December 2018.
Toni has had many careers including finance and being the owner of a Beauty Salon before Solana was born. Since having Solana, Toni has become a full time mum to her little girl to care for her and ensure she is able to attend the many hospital appointments, as Solana’s needs are extremely complex.
Toni says “when Solana was diagnosed I knew I wanted to set something up to help find a cure for her disorder. This dream has come true and I am raising as much as I can to fund research towards finding a cure! I am a passionate sportswoman and participate in many endurance races/events in order to raise money and awareness for GRI Disorders. I am extremely excited to be working with all the Trustees of GRI-UK as I believe together we have an amazing team of devoted and dedicated advocates who all want to improve the lives of all those affected by a GRI disorder.”
Alexandra Anghelina
- Trustee
Alexandra is mum to two happy and energetic girls, Maia (8) and Eva (5). Maia has a GRIA2 gene disorder.
Alexandra has spent the last 12 years working in the tech industry as a technical recruiter, partnering with teams and supporting growth across international companies.
She says: “Our journey with GRIA2 has been full of learning, questions, and small but meaningful wins. Getting a diagnosis is only the first step — what really matters is the support, the community, and the hope that comes from ongoing research. I’m really honoured to be part of GRI-UK, helping to bring families together, raise awareness, and contribute in any way I can to a better future for our children.”
Ashleigh James
- Trustee
Ashleigh is mum to two daughters, Florence and Holly. In September 2024, just before her first birthday, Holly was diagnosed with a GRIN2B-related neurodevelopmental condition.
Since Holly’s diagnosis, Ashleigh has become a passionate advocate for early intervention and has seen first-hand the life-changing difference that timely access to therapies, support and community can make – not only for a child’s development, but for an entire family.
Professionally, Ashleigh has over 15 years’ experience in strategic insights and consumer research. She cares deeply about bringing the voice of real people into decision-making and translating research and data into clear, meaningful actions.
Ashleigh says: “Holly’s diagnosis has given our family a completely new perspective on life and what truly matters. I want to use my time at GRI-UK to help advocate for rare families like ours – supporting access to early intervention, raising awareness of the rare disease community, and helping build a world where every child is supported and included.”
Charlotte Spencer
- Social media lead
Charlotte is a proud single mum to her amazing 9-year-old daughter, Amelia. Amelia was born in Spain and has GRIA2, which has made their journey together both unique and inspiring.
Charlotte grew up in Spain and has worked in a variety of roles over the years, with her main career being a translator. She worked in hospitals and wherever her language skills were needed, helping people communicate and feel understood during important moments in their lives.
Charlotte says: “creativity has always been a big part of my personality. I love social media, enjoy designing, and keep up with all the latest trends. I’m passionate about creating, connecting with people, and bringing fresh ideas to life. Having a diagnosis is the key to accessing treatment, driving research forward, and bringing us closer to cures, and I truly believe that future is not far away.”
Colette Dufficy
- Trustee
Colette is a software engineer, and mum to Aaron who has a GRIN2B variation. With a background in graphic design, she brings a creative approach to the GRI-UK’s communications and events.
Colette says: “I’m passionate about connecting families, clinicians, and researchers, and helping to ensure that no parent or carer feels alone on their journey.”
David Clark
- Trustee
David is the first Trustee to join GRI-UK who is not directly affected by a GRI disorder, bringing an independent external perspective to the charity’s work around awareness, engagement, and growth. He is a seasoned marketing and product leader with nearly two decades of experience across technology, consulting, telecoms, and AI, helping organisations strengthen reputation, modernise communications, and support growth through clear strategic positioning and audience engagement.
David joined GRI-UK because he recognised the challenge many rare disorder charities face in building public awareness and attracting attention beyond those directly affected. He hopes to apply his professional experience to help strengthen awareness of GRI disorders, support the charity’s growth, and help amplify the voices of affected families and researchers.
David says: “GRI disorders are still not widely understood, despite the huge impact they have on the people living with them and their families. I want to support GRI-UK in raising awareness, strengthening research, and helping more people understand the realities of living with these conditions.”
Nick Ward
- Trustee
Nick is father to Sam and Kirsty. Sam is a sweet natured and happy boy who has GRIN 1 disorder.
Nick has over 25 years’ experience working in the Civil Service and public sector, designing and managing large scale funding programmes, corporate governance and policy. Nick has also been Chair of Governors for a special educational school in England and Chair of Trustees for Fairview School which is the specialist educational provision for Perth and Kinross in Scotland.
Nick says “Sam was the first person diagnosed with GRIN 1 by NHS England and, at the time, there was little to no specialist support and awareness of the disorder. The importance of GRI-UK, alongside our international partners, in bringing a focus on the GRI family of disorders, connecting with researchers and clinicians as well as supporting our families cannot be overestimated and I am keen to help deliver our shared goals”.
Shilpa Kaluti
- Trustee
Shilpa is a mum to 2 beautiful daughters. The eldest daughter diagnosed with GRIN2A.
Shilpa is the co-founder and CFO of a technology consulting company of over 350 people, where she leads finance, operations, and the strategic growth of the business. With a background in IT and many years of building and scaling teams, she brings a practical, people-first approach to everything she takes on. Outside of work, she enjoys sewing and listening to music.
In her own words:
“Becoming a Trustee of GRI-UK means a lot to me. Behind every diagnosis is a family holding onto hope, and I want to help carry some of that hope forward. I’ll bring what I can from my personal experience and background, but honestly, I’m just as keen to listen and learn from the families and researchers who are the heart of this community. Whether that’s opening up my network, helping with fundraising, or being there for a conversation, I’m ready to get stuck in. I am excited to work with everyone at GRI-UK and play my part in building something better, together.”
Sue Banks
- Trustee – Family Support
Sue Banks is a founding member of GRI-UK and a dedicated advocate for families affected by GRI disorders. Her passion for the cause began following the diagnosis of her grandson, Evan, who has GRIN1, at the age of eight (2018).
Since then, Sue has played a pivotal role in fundraising and community-building efforts. She has raised many thousands of pounds through a variety of initiatives including coffee mornings, concerts, activity challenges, community events, and the sale of her famous homemade marmalade. She has worked closely with the CureGRIN Foundation, who recognised her contribution with a GRI Patient Impact Award.
Sue was the founding Secretary of GRI-UK, bringing valuable experience of running her own business and 43 years in nursing. She completed the Beacon Mentorship Programme (2024–2025), further strengthening her skills in advocacy and leadership. Sue has now supported more than 40 families joining the GRI-UK network, and initiated our GRINelders support group.
Now in her mid 70s, Sue will continue her involvement with GRI-UK as Family Support lead.
Sue says: “I am looking forward to being able to concentrate on Family Support, as it is the vital heart of GRI-UK.”
Outside of her work with the charity, Sue enjoys playing the harp, gardening, baking, and spending time with her nine grandchildren.
Want to become a trustee?
If you would like to find out about becoming a trustee of the GRI-UK, please get in touch with us
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Volunteer
As we embark on our mission to support families affected by GRI conditions, we are seeking individuals with a variety of skills and experiences to help GRI-UK become a stronger organization.