About us

We are a parent and family led, patient centred charity registered in the UK

Who we are

We are a parent and family led, patient centred charity registered in the UK working to help people affected by GRI gene disorders. As a group deeply affected by GRI disorders we know how tough it is to have a child or care for someone with GRI, so we decided to come together to support and empower other families in the UK, and influence as we search for the very best treatments and cures for our children and family members.

What we do

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

Raising awareness on GRI disorders

Raising awareness on GRI disorders, including within the NHS of the symptoms, needs and medical conditions, to help enable better and faster access to diagnosis and treatments.

Finding innovative cures and treatments

Finding innovative cures and treatments for people with GRI disorders through fostering collaboration among diverse stakeholders, bringing together patients, parents, family members, medical professionals, researchers, scientists, pharmaceutical, bioscience and academic communities.

Supporting and empowering individuals and families

Supporting and empowering individuals and families affected by GRI disorders so that those diagnosed can lead the best life possible.

Trustees

Alyson Koopman

Alyson is a married mum to daughter Ada and son Evan, 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 13 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”

Toni Clarke

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 finally come true and I will devote time to raise as much as I can to fund research towards finding a cure! I am a passionate sportswoman and will 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 parents who all want to improve the lives of our little ones in the future!”

Susan Banks

Sue’s grandchild Evan has GRIN1, and since Evan’s diagnosis 6 years ago Sue has become passionate about fundraising to find a cure for GRI disorders.

Sue became a family fundraiser and has raised over £12,000 for the CureGRIN Foundation. Sue has taken part in the “Get Moving Campaign” for 3 years and in 2023 become a CureGRIN Foundation UK family Ambassador and joined the Informal European Alliance in 2024.

Sue enjoyed meeting a lot of families at CureGRIN Foundation Meet and GRI in London in March 2024 and is looking forward to growing GRI-UK with them.

Sue’s hobbies are harp playing, baking and enjoying her nine grandchildren.

Sue says she is “so proud of our team of Trustees at GRI-UK, and we are working hard to launch GRI-UK, watch this space everyone we are on the move”.

Kristina McKean

Kristina has 2 daughters, Cienna, aged 12 and Morgan aged 20. Morgan was diagnosed with GRIN 1 Gene Disorder in November 2022 at 19 years old.

Kristina is experienced in Finance and HR Management and has volunteered with her daughters, School Parent Councils and Clubs over the last 20 years, helping and organising fundraisers. She also runs her own crafting and dancewear business in her spare time. The family love their family holidays and especially going to the Magic Kingdom to see Mickey!

Kristina is very excited to be working with GRI-UK. She is also a Family Ambassador for CureGRIN Foundation, working closely with Sue Banks.

Kristina says “not knowing what was wrong with Morgan for nearly 20 years and then being diagnosed with GRIN 1 Gene Disorder has given me a focus on what I might be able to do to help Morgan and others diagnosed with a GRI Gene Disorder. Meeting and communicating with people who have children with GRI Gene Disorders has been very helpful to us as a family and I am excited to see what might happen in terms of cures for Gene Disorders in the future, hopefully not to distant future”.

Jillian Hastings Ward

Jillian has 2 children, including Sam, who was the first child diagnosed by NHS England with a GRIN1 Gene Disorder.

Jillian is an experienced patient advocate, with professional experience in policy development, research and project management. She was a founding Board Member of CureGRIN Foundation, and has been Chair of the Participant Panel at Genomics England from 2017-2024.

Jillian says “Genomic medicine is helping to diagnose more and more people with GRI disorders every year. But what happens after diagnosis is even more important. I am really excited about the prospect of helping GRI-UK, building our community and working with researchers to develop treatments that can improve our quality of life.”

Tina Roberts

Tina has 3 children. Her youngest daughter Mathilda has a GRIN2B Gene Disorder. Mathilda is now 14 and was 10 before she got diagnosed with GRIN2B.

Tina has over 25 years experience in buying and merchandising across a number of big and small multinational retailers. Tina worked across the world to build and grow businesses through strategic partnerships.

Tina is dedicated to finding treatments and cures for all patients with GRI disorders and as well as being a trustee Member of GRI-UK, she is a member of the Board for CureGRIN Foundation.

Tina says: “It was very difficult not knowing Mathilda’s diagnosis for the first 10 years of her life. We had to fight to get Mathilda tested for countless things until she was finally accepted on the 100,000 Genome project which is how we finally got her diagnosis. Having a diagnosis is vital for getting treatments and finding cures and I am confident we will get there in the not too distant future”

Shilpa Kaluti

Kristina has 2 daughters, Cienna, aged 12 and Morgan aged 20. Morgan was diagnosed with GRIN 1 Gene Disorder in November 2022 at 19 years old.

Kristina is very excited to be working with GRI-UK. She is also a Family Ambassador for CureGRIN Foundation, working closely with Sue Banks.

Michael Clarke

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