A Local families drive for new charity for their daughter’s Rare Disease!
It’s GRI Awareness Month, a subject close to the heart of one of our moderators.
Local family’s journey began in May 2003 when their daughter Morgan (pictured) was born with significant developmental delays and it became apparent that she was not meeting any of her milestones. Fast forward to November 2022 and their now 19-year-old child was diagnosed with a GRIN1 Gene Disorder, a rare and devastating group of genetic conditions that affect all elements of everyday life.
Morgan was born with severe developmental delay, hypotonia (low muscle tone), non-verbal communication, and a host of other complex challenges. Many individuals with GRI Gene Disorders remain dependent on their parents or caregivers for their entire lives.
Determined to make a difference, Morgan’s Mum Kristina, a moderator of Blantyre Live Chat Group, became a Family Ambassador for the CureGRIN Foundation based in America with a worldwide presence.
CureGRIN have made strides ahead in funding research to find a cure and drug trials to help alleviate symptoms of the Disorders such as seizures and brought the GRI Community together. Kristina has now also joined forces with other parents from across the UK to start a UK Based charity, GRI-UK, their mission is clear: to fund vital research, promote earlier diagnosis, and provide unwavering support to affected families.
Bringing families together who have such similar lived experiences of caring for children and adults with GRI Gene Disorders has been a huge milestone for their growing community. With over 60 families strong and counting to grow across the UK, they draw strength and support from one another, whilst raising awareness and working to advance research and treatments for these extremely rare conditions.
Recently launching its website: www.gri-uk.org, the site is a hub for information. The charity has also been busy fundraising, with an impressive £30,000 raised so far. With GRI Awareness month across the month of March 2025, Kristina is promoting initiatives to raise awareness of GRI Gene Disorders.
For those interested in supporting GRI-UK’s mission you can find more on Facebook https://www.facebook.com/share/15NkDtUr7q/?mibextid=wwXIfr or on their website or by emailing info@gri-uk.org
We wish Morgan and her family the very best for the future and hope this article helps create a little more awareness of GRI.
