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Alex TLC Steering Group
We are looking for individuals who are affected by a
Leukodystrophy
, or carer for/partner of someone who is affected.
We are looking for individuals who are affected by a
Leukodystrophy
, or carer for/partner of someone who is affected.
Hidden
Administrator
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Leukodystrophy Support
3 years ago
Keeping up to date with research studies
We have recently put together a research summary, which includes information about recent and existing
Leukodystrophy
studies, which you can find on our website: https://www.alextlc.org/how-we-support-you/research/research-summaries-dec-2020-march-2021/?
We have recently put together a research summary, which includes information about recent and existing
Leukodystrophy
studies, which you can find on our website: https://www.alextlc.org/how-we-support-you/research/research-summaries-dec-2020-march-2021/?
Hidden
Administrator
in
Leukodystrophy Support
3 years ago
Keeping up to date with research studies
We have recently put together a research summary, which includes information about recent and existing
Leukodystrophy
studies, which you can find on our website: https://www.alextlc.org/how-we-support-you/research/research-summaries-dec-2020-march-2021/?
We have recently put together a research summary, which includes information about recent and existing
Leukodystrophy
studies, which you can find on our website: https://www.alextlc.org/how-we-support-you/research/research-summaries-dec-2020-march-2021/?
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Administrator
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Leukodystrophy Carriers
3 years ago
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Practice Meditation or Mindfulness?
Or does anyone find it beneficial for managing any pain you experience due to
Leukodystrophy
?
Or does anyone find it beneficial for managing any pain you experience due to
Leukodystrophy
?
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Administrator
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Leukodystrophy Support
3 years ago
Practice Meditation or Mindfulness?
Or does anyone find it beneficial for managing any pain you experience due to
Leukodystrophy
?
Or does anyone find it beneficial for managing any pain you experience due to
Leukodystrophy
?
Hidden
Administrator
in
Leukodystrophy Carriers
3 years ago
Does the severity of your leukodystrophy symptoms differ according to the time of year?
Has anyone found that their
leukodystrophy
symptoms are different; becoming better or worse? We were interested to find out from you, whether your symptoms differ in severity depending on the time of year and weather, if so, then let us know how.
Has anyone found that their
leukodystrophy
symptoms are different; becoming better or worse? We were interested to find out from you, whether your symptoms differ in severity depending on the time of year and weather, if so, then let us know how.
Hidden
Administrator
in
Leukodystrophy Carriers
3 years ago
Does the severity of your leukodystrophy symptoms differ according to the time of year?
Has anyone found that their
leukodystrophy
symptoms are different; becoming better or worse? We were interested to find out from you, whether your symptoms differ in severity depending on the time of year and weather, if so, then let us know how.
Has anyone found that their
leukodystrophy
symptoms are different; becoming better or worse? We were interested to find out from you, whether your symptoms differ in severity depending on the time of year and weather, if so, then let us know how.
Hidden
Administrator
in
Leukodystrophy Support
3 years ago
I Crossed Over into Adult Cerebral ALD
Keith Van Haren, a researcher and physician, who treats children with ALD at the Lucile Packard Children’s Hospital Stanford which is designated as a candidate
Leukodystrophy
Care Network (LCN) Center.
Keith Van Haren, a researcher and physician, who treats children with ALD at the Lucile Packard Children’s Hospital Stanford which is designated as a candidate
Leukodystrophy
Care Network (LCN) Center.
SongStream
in
AMN EASIER
4 years ago
New HU pages - please follow :)
They are:
Leukodystrophy
Carriers: https://healthunlocked.com/
leukodystrophy
-carriers
Leukodystrophy
Support: https://healthunlocked.com/
leukodystrophy
-support The
Leukodystrophy
Support page is for all those affected by a
leukodystrophy
, for example: those directly affected by a
leukodystrophy
, carers
They are:
Leukodystrophy
Carriers: https://healthunlocked.com/
leukodystrophy
-carriers
Leukodystrophy
Support: https://healthunlocked.com/
leukodystrophy
-support The
Leukodystrophy
Support page is for all those affected by a
leukodystrophy
, for example: those directly affected by a
leukodystrophy
, carers
Olivia_Bostock
in
AMN EASIER
4 years ago
Introducing myself - introduce yourself in the comments below!
Please use this platform to ask any questions you like, and discuss any issues/feelings that you have regarding all things
leukodystrophy
. But for now,
introduce yourself in the comments below!
Please use this platform to ask any questions you like, and discuss any issues/feelings that you have regarding all things
leukodystrophy
. But for now,
introduce yourself in the comments below!
Olivia_Bostock
Administrator
in
Leukodystrophy Carriers
4 years ago
Introducing myself
Please use this platform to ask any questions you like, and discuss any issues/feelings that you have regarding all things
Leukodystrophy
. Let's help each other.
Please use this platform to ask any questions you like, and discuss any issues/feelings that you have regarding all things
Leukodystrophy
. Let's help each other.
Olivia_Bostock
Administrator
in
Leukodystrophy Support
4 years ago
How can I help my student with leoukodystrophy?
Hi, I would like to know how can i help a student with
leukodystrophy
, he is 13 years old he is not taking any treatment. he is sometimes aggressive, it seems that he does not understand instructions, and refuses to do what is asked. when we (his mom and me) talk to him about his behavior, he seems
Hi, I would like to know how can i help a student with
leukodystrophy
, he is 13 years old he is not taking any treatment. he is sometimes aggressive, it seems that he does not understand instructions, and refuses to do what is asked. when we (his mom and me) talk to him about his behavior, he seems
melir
in
AMN EASIER
4 years ago
Women carriers. Do they have physical symptoms?
I have never met Dr Tsuji, but I did a rough translation of his Japanese, have a read, he says what we all know - women do indeed experience AMN symptoms. https://vlcfa.org/themeatandpotatoes/2020/03/23/adrenal-
leukodystrophy
-and-women/ I have been busy putting up as much AMN related info as I can on
I have never met Dr Tsuji, but I did a rough translation of his Japanese, have a read, he says what we all know - women do indeed experience AMN symptoms. https://vlcfa.org/themeatandpotatoes/2020/03/23/adrenal-
leukodystrophy
-and-women/ I have been busy putting up as much AMN related info as I can on
monkeybus
in
AMN EASIER
4 years ago
UMN Survey for Newborn Families
The
Leukodystrophy
Center at the University of Minnesota is uniquely positioned to answer important questions about ALD related to biomarkers, imaging, initiation of cerebral disease, neuropsychology, oxidative stress, and possible genotype-phenotype correlations. We need your help.
The
Leukodystrophy
Center at the University of Minnesota is uniquely positioned to answer important questions about ALD related to biomarkers, imaging, initiation of cerebral disease, neuropsychology, oxidative stress, and possible genotype-phenotype correlations. We need your help.
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Have Your Name Listed with Other Leukodystrophy Families on the Back of a T-Shirt!
(What a wonderful way for one to wear and show support for the fight on
Leukodystrophy
!)
(What a wonderful way for one to wear and show support for the fight on
Leukodystrophy
!)
SongStream
in
AMN EASIER
5 years ago
Survey-based Natural History Study for Men and Women with AMN
This study is funded by the United
Leukodystrophy
Foundation.
This study is funded by the United
Leukodystrophy
Foundation.
SongStream
in
AMN EASIER
5 years ago
ALD Newborn Research Study
The
Leukodystrophy
Resource and Research Organisation Inc. is conducting a qualitative research study on the different perspectives parents have on the newborn screening process. The study consists of either a phone or Skype interview lasting between 30 and 60 minutes.
The
Leukodystrophy
Resource and Research Organisation Inc. is conducting a qualitative research study on the different perspectives parents have on the newborn screening process. The study consists of either a phone or Skype interview lasting between 30 and 60 minutes.
SongStream
in
Parents of ALD Newborns
5 years ago
ULF Conference
I just wanted to remind you that the United
Leukodystrophy
Foundation's annual family conference is quickly arriving. It is June 27-29 in Itasca, Illinois and is being held at the Eaglewood Resort. I hope to see many of you there.
I just wanted to remind you that the United
Leukodystrophy
Foundation's annual family conference is quickly arriving. It is June 27-29 in Itasca, Illinois and is being held at the Eaglewood Resort. I hope to see many of you there.
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Neonatal Adrenal Leukodystrophy
Hi everyone 👋 I just stumbled across this during my routine search on the internet for info on ALD. I take care of my twin brother who has Neonatal ALD. His symptoms started as an early infant Progressing fast and eventually diagnosed. We are both 36 years old. For some reason he didn’t die. He was
Hi everyone 👋 I just stumbled across this during my routine search on the internet for info on ALD. I take care of my twin brother who has Neonatal ALD. His symptoms started as an early infant Progressing fast and eventually diagnosed. We are both 36 years old. For some reason he didn’t die. He was
KatieeeK
in
Parents of ALD Newborns
5 years ago
ULF Meeting in June
I wanted to give all you parents a heads up that the United
Leukodystrophy
Foundation will be having their annual conference in Eaglewood, IL. June 27-29. They will be offering travel stipends in the not too distant future, and I will post when the application is on their website.
I wanted to give all you parents a heads up that the United
Leukodystrophy
Foundation will be having their annual conference in Eaglewood, IL. June 27-29. They will be offering travel stipends in the not too distant future, and I will post when the application is on their website.
fightald
Administrator
in
Parents of ALD Newborns
6 years ago
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