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3rd July 2025
Personal stories of leukodystrophy are the best way to raise awareness of these life altering conditions. If you live close to a Light Up Blue location, and would like to share your story to help spread the word about leukodystrophy and Alex TLC, please contact your local newspaper.
20th June 2025
International Neonatal Screening Day takes place on 28th June each year. The day is an opportunity to raise awareness of the vital need for newborn screening worldwide. Since last year we’ve been involved in lots of newborn screening activities in the charity.
18th June 2025
Disabled Children’s Partnership are asking for people to sign their open letter to the government to help save EHC plans.
1st May 2025
Read a recent interview with Taylor Kane founder of Remember The Girls. The columnist chats with Taylor about her inspiration for Remember The Girls and the support available for women with X-linked disorders.
23rd April 2025
Our Director of Support, Karen, presented at Addenbrookes Hospital. She spoke to the scientists in the laboratory about the importance of newborn screening for families.
22nd April 2025
“Alex TLC has become a lifeline for our family since Lily’s diagnosis. I’m incredibly proud that Target Darts is supporting a charity so close to my heart, and I hope our efforts can make a real difference for other families facing leukodystrophy.” — Emily, Head of Product at Target
22nd April 2025
Are you or a loved one affected by ALSP? You can help raise awareness of the condition by sharing your personal story as part of ALSP Awareness Month in May.
10th April 2025
Lily is affected by metachromatic leukodystrophy (MLD). Lily’s parents are calling on the government, for the NHS and National Screening Committee to add MLD to the list of serious genetic conditions that are screened for at birth.
20th March 2025
7th March 2025
Our Research Analyst, Kristina, has had a great day attending The Living Well Symposium in Stoke-on-Trent. The event was co-run by Metabolic Support UK and Beacon for Rare Diseases.
28th February 2025
Our campaign ‘More than you can imagine’ focuses on raising awareness of leukodystrophy by sharing people’s experiences of the condition. Throughout the day we will be sharing words from our community members, team members and wider community.
24th February 2025
Watch our ‘In conversation with…’ video series on our YouTube channel. There are nine conversations hosted by our Support Services Manager, Karen Harrison, with individuals and families affected by leukodystrophy.
