We offer one-to-one or peer group online support through video conferencing. Please get in contact email@example.com, if you would like to take part in either private or our recorded broadcasts.
We are grateful to the London Community Response Fund for providing us with the relevant funding to realise this important project for our community.
We are highlighting many of our charity objectives, introducing many of our families to our ever growing community by starting a new series called ‘ In Conversation with“. Karen, our Support Manager, hosts numerous conversation with affected families, medical professionals and charity insiders in a casual and informative format to raise further awareness of the many of the leukodystrophies we support and champion in our mission.
We are taking an approach of ‘charity as a broadcaster’ and ‘support group facilitator’ by using contemporary technology software to facilitate a cost effective and scaleable support platform for all our beneficiaries.
Through video conferencing software we are be able to create support networks, provide information and highlight our charity activities. This new strategy combines the successful elements of our Community Weekend with the vital role of our Support Service Manager as video podcasts and private support services.
Episode 1 : In conversation with: Rosie, Karl, Isla & Alfie
First of our series of conversations during the Coronavirus lockdown with one of our families Rosie, Karl, Isla & Alfie. Hosted by our Support Manager Karen Harrison.
Episode 2 : In conversation with: Olivia Bostock – being a young carrier of ALD
In conversation with…Alex TLC Support Manager talks to Olivia Bostock about being a young carrier of ALD, and what that means to her, losing her father Mark who was on Alex TLC’s Chair of Trustees for many years who had adult onset ALD
Episode 3 – April & Gerard : two families discuss residential care during Covid-19
Karen talks with April who tells us how she is coping with her son Jake being in residential care and Gerard talks openly about his daughter Caroline and the decision they made to use extended respite at this time
Episode 4 – Joel : Living with onset adult ALD ( adrenoleukodystrophy )
Karen talks with Joel who has adult onset adrenoleukodystrophy (ALD), he talks about living independently, life during lockdown and his hopes for the future.
Episode 5 – Rob & Cathy : Diagnosis and living with AMN
In conversation with Rob and Cathy, Rob talks about his diagnosis of adrenomyeloneuropathy (AMN) and how the Covid lockdown is affecting him
Episode 6 – Jillian Smith : Experience of going through a bone marrow transplant.
Jillian shares her experience of going through a bone marrow transplant (BMT) with her son Grady after he was diagnosed with ALD.
Episode 7 – Aisling & Sinead Corr – Growing up with 2 ALD brothers.
In conversation with Aisling and Sinead Corr, they share their experience of growing up with two brothers, Ruairi and Tom who were diagnosed with adrenoleukodystrophy (ALD).
Episode 8 – Nahed Sarig – Daughter Living with Alexander Disease.
In conversation with Nahed Sarig on her daughter’s diagnosis of Alexander Disease.
Episode 9 – Supporting Symptomatic Adults.
In conversation with several family members about their experience of supporting and caring for an affected adult with symptoms.