Posts - Leukodystrophy Carriers | HealthUnlocked

Leukodystrophy Carriers

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Have you or a family member recently been diagnosed with a genetic leukodystrophy?

It is great you have found out about the Leukodystrophy Carriers group on Health...

Alex TLC Steering Group

We are looking for individuals to be part of the Alex TLC Steering Group. The St...

Alex TLC Newsletter and Communication

At Alex TLC, we currently send out quarterly newsletters (the next one will be i...
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Upcoming Beneficiary Events at Alex TLC

Alex TLC have a variety of different beneficiary events coming up over the next...

Our petition has reached it's target of 10,000 signatures!

Our newborn screening campaign, to get ALD added to the newborn screening progra...

Keeping up to date with research studies

We have recently put together a research summary, which includes information abo...

Practice Meditation or Mindfulness?

Does anyone practice meditation and mindfulness? What do you find it beneficia...

Covid Vaccine side effects

I just received my last Pfizer or second jab for the virus on Friday. I was cur...

Does the severity of your leukodystrophy symptoms differ according to the time of year?

Now that it is Spring, the weather is starting to improve and it's becoming warm...

Coronavirus vaccination.

It is now coming up to the time for some people to have their second Coronavirus...

Our petition...to get ALD added to the UK's Newborn Screening Programme

We are petitioning to get ALD added to the UK's Newborn Screening Programme. To...

Covid shielding ending tomorrow...how are you feeling about this?

Morning Everyone 👋 Shielding is coming to an end tomorrow in England & Wales......

Hello from the Beneficiary Engagement Officer at Alex TLC 😊

Morning Everyone, I just wanted to introduce myself. My name is Suzanne and I am...

Legs aching after walking

Hi everyone, My legs seem to 'twitch' more when I'm stressed and they ache after...
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Olivia_BostockAdministrator

Community Weekend - 7th/8th November

Hi everyone, I just wanted to let you know about the Alex TLC Community Weekend ...

Hello

Hi everyone, I just thought I would introduce myself I am a carrier of ALD, I fo...

AMN female

I have spoken to my metabolic consultant today and she has suggested antidepress...

Exercise to help symptoms

Hi everyone I read an article that doing exercise like Pilates/yoga can help r...
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Olivia_BostockAdministrator

Introducing myself - introduce yourself in the comments below!

Hi everyone, I hope you're all well. My name’s Olivia, I'm a trustee of Alex TLC...
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Olivia_BostockAdministrator

Episode 2 : In conversation with: Olivia Bostock - being a young carrier of ALD

Our 'In conversation with...' series continues with Kare,n our Alex TLC Support ...

Uncertainty

Not really where to start with this, as my wife has for the last 8 months or so ...
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