It is our 20th birthday on Monday 23rd September. We would like to celebrate our achievements over the last 20 years with our community.
We are posting on our social media throughout the whole of September looking back over the last 20 years and sharing memories with our community.
When the charity was established in 2004 we were called ALD Life and only supported Adrenoleukodystrophy (ALD). In 2019 we made the decision to expand our support to all types of leukodystrophy and we changed our name to Alex, The Leukodystrophy Charity (Alex TLC). To find out more about the charity, including how we began, visit: https://alextlc.org/about/
Our A-Z of leukodystrophy pages include all of the conditions we support, with information about the causes, symptoms and affected age range of each. All the medical information on our website has been checked for accuracy by medical leukodystrophy experts and the Alex TLC team. To view our A-Z of leukodystrophy pages, visit: https://alextlc.org/leukodystrophy/a-z-of-leukodystrophy/
We are the patient voice for the leukodystrophy community. We undertake various projects and campaigns to improve the quality of, and access to, treatments for leukodystrophy. We work towards a common goal of improving practice for rare disease through our collaborations with the NHS, specialist medical professionals and scientists, peer and umbrella organisations. We collaborate with some significant stakeholders consisting of national, European, and international organisations including, NHS England Inherited White Matter Disorder (IWMD) Service Service and Patient Registry, Leukolabs, European Reference Network (ERN), United Leukodystrophy Foundation (ULF), Global Leukodystrophy Initiative (GLIA), and research organisations. To find out more about the NHS IWMD Service and Patient Registry, visit: https://alextlc.org/condition-management/nhs-patient-service-registry/ To find out more about research and Alex TLC, visit: https://alextlc.org/research-and-projects/research/research-and-alex-tlc/
We are campaigning for Adrenoleukodystrophy (ALD) to be added to the UK Newborn Screening Programme. Our campaign ‘Screen our Boys’ highlights how screening for ALD at birth could save the lives of those identified with ALD, identify wider family members who are at risk and allow options for having future children free from ALD. To find out more about ‘Screen our Boys’ campaign, visit: https://alextlc.org/campaign/screen-our-boys-campaign/
As well as one to one support, we offer a range of peer support options in the charity. We link individuals and families affected by leukodystrophies so you can share experiences and gain mutual support. There are different forms of peer support offered in the charity which you can access. This includes our monthly online community meetings, our Facebook Group and Connecting Together. To find out more about our peer support options, please visit: https://alextlc.org/how-we-support-you/peer-support/
We are proud to be able to create monthly research summaries for our community. Our research summaries are provide information about the latest research and updates from current clinical trials. Our research analyst and volunteers summarise medical research papers into easy to understand language which sensitively explain potential impact for patients. To read our summaries, visit: https://alextlc.org/research-and-projects/our-research-summaries/
We provide small financial grants for families and individuals affected by leukodystrophy. This financial support is for patients and families to access equipment, care or therapy, those undergoing Bone Marrow Transplant/Gene Therapy or for families in financial hardship or going through bereavement. We also offer grants for those wishing to access counselling outside of the sessions offered by our counsellor. To find out more about our grant programme, visit: https://alextlc.org/how-we-support-you/grant-programme/
An important part of our mission is to ‘…raise awareness through campaigns targeting the general public and the medical profession.’ We do this through our campaigns for Rare Disease Day on 28th February and Leukodystrophy Awareness Month throughout September. There are lots of other ways our community can help to raise awareness of leukodystrophy including leaflet distribution, sharing your story or telling your employer about us . Would you like to help us raise awareness of leukodystrophy? Visit our website to find out more: https://alextlc.org/support-us/raise-awareness/
We’re so grateful for the support of our key partners, we couldn’t help so many people without them. Our partners include Genetic Alliance UK who are an alliance 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions. There is also NHS England who invited Alex TLC to represent patient voice on the development of the new NHS England IWMD (leukodystrophy) patient service and clinical registry. To find out about about our key partners, visit: https://alextlc.org/about/partnerships/
We offer a range of different support options in the charity, which includes one to one support and online community meetings.
Over the last year the support we have offered individuals and families has included:
To find out about about how we support you, visit: https://alextlc.org/how-we-support-you/
We provide support for all different types of leukodystrophy. We are currently supporting individuals affected by 24 types of leukodystrophy as well as a number of unknown or unnamed leukodystrophies. Although individuals or families have different conditions many leukodystrophies cause similar symptoms and challenges which is why our community is so important.
To find out about about the different types of leukodystrophy, visit: https://alextlc.org/leukodystrophy/a-z-of-leukodystrophy/
In 2023 we introduced our Counselling Service to provide free counselling sessions for all our adult community members, including both affected individuals and family members. Our BACP (British Association for Counselling and Psychotherapy) registered counsellor, Jenna Jones, offers up to 8 counselling appointments on a weekly basis.
To find out about about our counselling service, visit: https://alextlc.org/how-we-support-you/counselling-service/
Over the past 4 years the Alex TLC team has expanded to include:
🔵 Suzanne, our Engagement and Communications Manager
🔵 Marlene, our Fundraising Manager
🔵 Fiona, our Fundraising and Communications Officer
🔵 Kristina, our Research Analyst
🔵 Jenna, our Counsellor
You can find out more about our team, here: https://alextlc.org/about/our-team/ We are so grateful to all our team members for their dedication to the charity and the Alex TLC Community.
Our YouTube channel contains 139 videos, including symptom management advice, charity presentations and personal stories.
Subscribe for free to keep up to date with new content. https://www.youtube.com/@AlexTLC
Last year, we made the decision to make our Community Weekends an annual event.
You can find out more about why our Community Weekends are so important, by clicking the link below: https://alextlc.org/how-we-support-you/peer-support/community-weekends/
In March this year, we launched a brand new website for our community.
There are a number of reasons why a new website was important for our charity:
⏺️ our condition pages are used and referred to by the NHS England Inherited White Matter Disorder (leukodystrophy) service and registry
⏺️ we wanted to improve user experience and make it easier for people to navigate around our website
⏺️ we updated existing information and resources
⏺️ we added additional information about the support we provide and our involvement in research
If you’ve not visited the new website, please check it out: https://alextlc.org/
Last year, we released our first children’s book. The book is a free resource for families following a diagnosis of Childhood Cerebral Adrenoleukodystrophy (CCALD).
To access, visit: https://alextlc.org/news/childrens-book-for-ald/
