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
- Trustee Member and Chair Person of GRI-UK
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
- Trustee Member and Vice Chair Person of GRI-UK
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
- Trustee Member and Secretary of GRI-UK
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
- Trustee Member and Treasurer of GRI-UK.
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
- Trustee Member of GRI-UK.
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
- Trustee Member of GRI-UK.
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
- Trustee Member of GRI-UK.
Shilpa is a dedicated mother of 2 beautiful daughters. Shilpa’s eldest daughter who is 14 years old was diagnosed with a GRIN2A in 2020.
Shilpa is a co-founder and CFO of a Tech consulting company which has over 350 employees. She is involved in finance, sales and strategic growth of the company. Shilpa is from an IT background and in her spare time likes sewing and listening to music.
Shilpa is very excited to be a Trustee of GRI-UK and working with the Team where she will be focusing on driving forward research, raising awareness, and fostering a supportive community for all affected individuals and their families.
Shilpa says “I am looking forward to working with others affected by GRI Gene Disorders, families and researchers so I can help towards building a brighter future, and looking forward to seeing the possibilities that lie ahead”.
Michael Clarke
- Trustee Member of GRI-UK.
Michael is a father of two, his daughter Solana, was diagnosed with GRIN2A just before she was 2yrs old in December 2018.
Michael has over 22yrs experience working in Financial Services with some of the worlds largest banks in sales, trading and structuring roles.
Michael says, “While Solana’s diagnosis has lead to many challenges, long hospital visits and constant worry about her long term health, it has given us an amazing perspective on life and a real sense of purpose to help our daughter and kids affected by the various GRI Gene disorders. We have met some of the most amazing people along the way and we’re are very optimistic about what we can do as a community to help find a cure and effective treatment.
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.