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Childhood Dementia Initiative
Australia
Registrace 16. 12. 2020
Childhood Dementia Initiative exists to urgently disrupt the impact of childhood dementia on children and families across the world.
Webinar: Global research inequity and opportunities for childhood dementia
A report released by Childhood Dementia Initiative in 2024 revealed ongoing, pervasive research neglect and inequity as well as concerning trends in global childhood dementia research activity. The report, titled Childhood Dementia Global Clinical Trial Landscape Analysis, can be found here:
www.childhooddementia.org/news/report-reveals-global-research-inequity
The report looked at global clinical trial activity and research funding levels.
In this webinar, the results of this analysis were presented followed by a panel discussion and Q&A with global experts. Opportunities for change that will accelerate the development of life-saving treatments and cures were discussed.
PANELLISTS:
Dr Matthew Ellinwood, Chief Scientific Officer at the National MPS Society and Professor Emeritus of Animal Science, Iowa State University.
Dr Leslie Meltzer, Chief Medical Officer, Orchard Therapeutics.
Felicity McManus, Family advocate and parent of a child with a dementia condition
Professor John Christodoulou, Chair of Genomic Medicine, Department of Paediatrics, University of Melbourne and the Co-Leader of the Brain and Mitochondrial Research Group at the Murdoch Children's Research Institute
Dr Kristina Elvidge, Head of Research, Childhood Dementia Initiative.
CO-CHAIRED BY:
Professor Kim Hemsley, Professor at Flinders University and Head of the Childhood Dementia Research Group at Flinders Health and Medical Research Institute. Kim is a member of Childhood Dementia Initiative's Scientific and Medical Advisory Committee;
and
Tiffany Boughtwood, Managing Director of Australian Genomics. Tiff is a Childhood Dementia Initiative Board Member and Chair of the Scientific and Medical Advisory Committee.
Learn more, get involved and donate here: www.childhooddementia.org
If your family is impacted by childhood dementia, we have information for you here:
www.childhooddementia.org/for-families
If you are a health professional and would like to learn more about childhood dementia, please visit:
www.childhooddementia.org/professionals
If you are a researcher and would like to learn more, get the latest information and collaborate with other researchers, please visit: www.childhooddementia.org/join-us/for-researchers
You can learn more about childhood dementia here: www.childhooddementia.org/what-is-childhood-dementia
You can find us here:
childhooddementiainitiative
www.linkedin.com/company/childhood-dementia-initiative/
childhooddementia
Child_Dementia
www.childhooddementia.org/news/report-reveals-global-research-inequity
The report looked at global clinical trial activity and research funding levels.
In this webinar, the results of this analysis were presented followed by a panel discussion and Q&A with global experts. Opportunities for change that will accelerate the development of life-saving treatments and cures were discussed.
PANELLISTS:
Dr Matthew Ellinwood, Chief Scientific Officer at the National MPS Society and Professor Emeritus of Animal Science, Iowa State University.
Dr Leslie Meltzer, Chief Medical Officer, Orchard Therapeutics.
Felicity McManus, Family advocate and parent of a child with a dementia condition
Professor John Christodoulou, Chair of Genomic Medicine, Department of Paediatrics, University of Melbourne and the Co-Leader of the Brain and Mitochondrial Research Group at the Murdoch Children's Research Institute
Dr Kristina Elvidge, Head of Research, Childhood Dementia Initiative.
CO-CHAIRED BY:
Professor Kim Hemsley, Professor at Flinders University and Head of the Childhood Dementia Research Group at Flinders Health and Medical Research Institute. Kim is a member of Childhood Dementia Initiative's Scientific and Medical Advisory Committee;
and
Tiffany Boughtwood, Managing Director of Australian Genomics. Tiff is a Childhood Dementia Initiative Board Member and Chair of the Scientific and Medical Advisory Committee.
Learn more, get involved and donate here: www.childhooddementia.org
If your family is impacted by childhood dementia, we have information for you here:
www.childhooddementia.org/for-families
If you are a health professional and would like to learn more about childhood dementia, please visit:
www.childhooddementia.org/professionals
If you are a researcher and would like to learn more, get the latest information and collaborate with other researchers, please visit: www.childhooddementia.org/join-us/for-researchers
You can learn more about childhood dementia here: www.childhooddementia.org/what-is-childhood-dementia
You can find us here:
childhooddementiainitiative
www.linkedin.com/company/childhood-dementia-initiative/
childhooddementia
Child_Dementia
zhlédnutí: 107
Video
Childhood dementia takes and takes... and takes
zhlédnutí 2,3KPřed 2 měsíci
There is no language for the grief a parent experiences when they are losing their child to dementia bit by bit over months, years or even decades. What do you call the loss you feel when your child is sitting in your lap, but they no longer have the ability to play, to eat, to walk or to talk? When they no longer know who you are? This is just one of the challenges of childhood dementia. All c...
Childhood dementia research inequity revealed
zhlédnutí 137Před 2 měsíci
Childhood Dementia Initiative’s Head of Research, Dr Kristina Elvidge, gives a brief introduction to our new analysis of childhood dementia research. The findings reveal historic and ongoing research inequity. The result: kids with dementia are dying because there hasn’t been enough research to find treatments and cures. But there is good news. Childhood cancer research has generated great outc...
Mum of kids with childhood dementia: accessing support
zhlédnutí 700Před 4 měsíci
Renee is mum to Hudson, Holly and Austin who all have childhood dementia caused by Niemann-Pick disease type C. In this video, Renee speaks about her experiences accessing support across education, palliative care and disability support through the NDIS. (The National Disability Insurance Scheme (NDIS) is Australia’s government scheme that gives funding for disability support.) We also asked he...
Mum of 3 kids with childhood dementia: a candid interview
zhlédnutí 8KPřed 4 měsíci
Renee is mum to Hudson, Holly and Austin who all have childhood dementia caused by Niemann-Pick disease type C. In this candid interview, Renee generously shares some of the impacts of childhood dementia on her family. Renee is one of the many families working to generate greater awareness and action to help children with dementia. Childhood Dementia Initiative is very grateful to her for shari...
Progress for kids with dementia
zhlédnutí 343Před 5 měsíci
Childhood Dementia Initiative’s CEO, Megan Maack, gives an update on the progress made for children with dementia in 2023. Megan covers the organisation’s 3 strategic focus areas: research, care and advocacy. You can find some more detail here: www.childhooddementia.org/news/progress-in-2023 Learn more, get involved and donate here: www.childhooddementia.org If your family is impacted by childh...
Childhood Dementia Initiative: An overview
zhlédnutí 198Před 5 měsíci
Childhood Dementia Initiative's CEO, Megan Maack, gives an overview of the organisation. Megan founded Childhood Dementia Initiative in 2020 to lead world-first action and awareness for all children with dementia. She pioneered the collective consideration of over 100 neglected genetic conditions that cause childhood dementia in order to improve research, healthcare and policy responses. 00:00 ...
Listening to families impacted by childhood dementia
zhlédnutí 173Před 6 měsíci
In this video, Childhood Dementia Initiative’s Joanne Kershaw explains the importance of consultation 'round table' discussions we’re holding. These sessions let everyone share their thoughts freely and fully. Together with New South Wales Health, we’re listening to families talk about their experiences with the health system. (If you’re outside Australia, that’s the health department in Austra...
The collective burden of childhood dementia: panel discussion on unmet needs and opportunities
zhlédnutí 202Před 6 měsíci
Following the recent publication of a world-first study on the extent of childhood dementia, this Dec 2023 webinar discussed the global opportunities, benefits and issues arising from the collective consideration of childhood dementia. Panellists included clinicians, researchers and health economists involved in the childhood dementia burden of disease study, and parents of children with dement...
Webinar: Brain Organoid Models for Childhood Dementia
zhlédnutí 194Před 7 měsíci
Webinar: Brain Organoid Models for Childhood Dementia
Webinar: Experiences with care & support services for families affected by childhood dementia.
zhlédnutí 167Před 8 měsíci
Webinar: Experiences with care & support services for families affected by childhood dementia.
Accessing Emerging Treatments for Childhood Dementia webinar recording
zhlédnutí 317Před 9 měsíci
Accessing Emerging Treatments for Childhood Dementia webinar recording
What childhood dementia takes from kids
zhlédnutí 11KPřed 10 měsíci
What childhood dementia takes from kids
Using the term ‘childhood dementia’: families’ perspectives.
zhlédnutí 183Před 10 měsíci
Using the term ‘childhood dementia’: families’ perspectives.
FACE it to make childhood dementia impossible to ignore
zhlédnutí 263Před 10 měsíci
FACE it to make childhood dementia impossible to ignore
Care and support for children with dementia
zhlédnutí 112Před 10 měsíci
Care and support for children with dementia
Paediatric palliative care for children with dementia
zhlédnutí 87Před 10 měsíci
Paediatric palliative care for children with dementia
Forever stories of families impacted by childhood dementia
zhlédnutí 135Před 11 měsíci
Forever stories of families impacted by childhood dementia
Using the term ‘childhood dementia’: health professionals’ perspectives
zhlédnutí 114Před 11 měsíci
Using the term ‘childhood dementia’: health professionals’ perspectives
The importance of hope when a child has dementia
zhlédnutí 94Před 11 měsíci
The importance of hope when a child has dementia
The symptoms and impacts of childhood dementia
zhlédnutí 358Před 11 měsíci
The symptoms and impacts of childhood dementia
Mia's Legacy of Love for all children with dementia
zhlédnutí 1,8KPřed rokem
Mia's Legacy of Love for all children with dementia
Update: progress made for children with dementia in 2022
zhlédnutí 1,3KPřed rokem
Update: progress made for children with dementia in 2022
Working with children with dementia & their families. Ep 1: Respect, care, kindness & hope
zhlédnutí 683Před rokem
Working with children with dementia & their families. Ep 1: Respect, care, kindness & hope
Working with children with dementia & their families. Ep 2: We are the experts on our children
zhlédnutí 295Před rokem
Working with children with dementia & their families. Ep 2: We are the experts on our children
Working with children with dementia & their families. Ep 3: Please do some research
zhlédnutí 182Před rokem
Working with children with dementia & their families. Ep 3: Please do some research
Working with children with dementia & their families. Ep 4: Use your knowledge
zhlédnutí 152Před rokem
Working with children with dementia & their families. Ep 4: Use your knowledge
That's so terrible.
We agree.
I can’t see the difference between her and others her age - in fact she seems more coherent if anything.
She's my age... I feel so bad for complaining about the things I missed during lockdown, I didn't know this existed.
😢
Unbelievable. Both my parents had dementia, but they were in their 80's. Never knew there was ayounger version, but in our world nowadays, with high spikes in ADHD and Autism, childhood dementia now a thing as well.
I thought dementia was exclusive to the elderly. Learning new things everyday i guess 💀
How can Humans deem nature unacceptable ?
“There is no cure” “unacceptable” and “donate now” is such a degenerate way to capitalize on feelings of others... What good would donations do?!
Bro I’m 14 I do NOT need to see this😭😭😭
My grandma had severe dementia, terrible at any age but at least she was 92 and lived a full life. I didn’t know there was childhood dementia, my heart aches for this girl and all her loved ones
Very sorry to hear about your grandma. It is terrible at any age!
I never had dementia, but my parents knew someone who was taken by it. They told me it’s a fate far worse than death. Living your whole life, and not being able to die peacefully because you’ve forgotten everything. I’m sorry for your loss.
Heart breaking
We agree.
wait this is satire right??? 😭
ofc u of all ppl would say this
Literally what would make you think that
This is heartbreaking! This should never happen to a child! It's bad enough when it happens to an adult.
Yea ok this is heartbreaking and I don’t think I want to watch this anymore 😢
How the f- -k can people believe in gods with this happening to kids ?
My mother works in a residential care units. Patients are mentally disabled to various degree. Some can interact with you and understand you but most of them are severely afflicted. It's pretty rare that someone admitted is solely physically disabled. She told me about the children unit. Told me that taking care of disabled adults is easier than children. She said that while there are happy or fun moments with adults, apparently the people taking care of the children have it rough. It's not because of the children's behavior or something, it's because it's hard to see them in this state. I was once admitted in a mental hospital because of major depression. There was this younger girl, Elena, whose affliction I never knew, just that her mind processed things slower, she always hid her face and behaved younger than her age. She was a nice girl. One of the reason I got better was because somehow spending time with me made her happy. Since we were close in age she opened up to me I guess. She presented me as a friend to her dad. She even decided on her own to get out of her comfort zone and try new things. I was surprised my presence had this effect on her ! My doctor who was also in charge of her told me she couldn't heal. Her condition could be eased but it was impossible that she'd live a normal life and that was why she stayed in an isolated part of the unit. On my last day, I tried my best to cheer her up and boost her motivation because I feared she'd feel lonely once more and regress. Somehow I was wrong to presume she'd need it because she looked at me odd before breaking into a smile and told me "You make me laugh, you're funny". I was being too sappy I guess ! Then she gave me a drawing of me and a colorful pearl bracelet twice my size. At the doorstep she pouted and waved me bye-bye. I've kept her gifts to this day, I wear her bracelet when I take exams. Even though Angelina and Elena certainly do not share the same disease, I can't help but be reminded of her. It breaks my heart to see how someone so young with so much to experience is cursed by fate. Even if we all wish she would have been born healthy, I feel like it would be an insult to say that Angelina shouldn't have been born the way she was. It feels like saying her life is not worth living and even I, the major depressive one, will tell you that it's always worth existing no matter how cruel life can be. I have hope she'll find her own kind of happiness, just like everyone out there -- even if it's difficult. I wish for her to be given the dignity of passing away peacefully when the time comes. And I pray searchers will find a way to prevent or ease childhood dementia in the future.
This is what they have to investigate for, to fix these real illnesses , not those woke magical dramas.
Something you would never conceive in your lifetime. Is this rare or common? Dementia is horrible at any age.
Angelina has one of the 100+, terminal, genetic conditions that cause dementia in childhood. It’s estimated that 1 in every 2,900 kids are born with one of these conditions. Around half die before the age of 10, most don’t reach adulthood. There has been a gross lack of research into treatments and cures and these conditions and their devastating impacts have attracted little attention or action until now. We're working to change that. There’s more info under our video description.
I thought we knew the cause of alzheimers in the mid nineties! What is the problem in the medical field?......too many issues. Patient is unfortunately not the first priority. And I truly feel bad stating this here, but once an individual has progressed to such a state, there isn't much more that can help. Early interventions which are healthy habits are best. God help us. We can do better😥
Hi, thanks for your comment and interest. Unfortunately, early lifestyle interventions can’t help kids with dementia. Dementia in childhood is caused by over 100 terminal, genetic conditions. It’s estimated that 1 in every 2,900 kids are born with one of these conditions. Around half die before the age of 10, most don’t reach adulthood. Early diagnosis is critical to ensuring that children can benefit from clinical trials and emerging treatments as unfortunately there are currently no treatments and cures. There has been a gross lack of research, attention or action directed to childhood dementia until now. We're working to change that.
😢
Incredibly sad and unfair! 😢
Totally agree with you.
I didn't even know that kids could get dementia.
You are definitely not alone in that! Lack of awareness is part of the issue these kids face. The disorders that cause childhood dementia are severely under-researched and families tell us that they struggle to get the healthcare and support they need. So the fact that you now know about it: it’s a massive step and part of positive shifts for kids like Angelina :)
This was in my feed and this is very sad and not something anyone should get, especially kids/teens. My heart goes out to the family and her as well.
Thanks for your care and awareness.
Jesus, is it acceptable? I really don’t think that’s the question. My life was forever changed after a TBI and I know firsthand the experience of losing your life, your friends, your job, and dealing with a neurological malady that science cannot help with. Is it acceptable? That just rubs me the wrong way. Life isn’t fair and no one makes it through without immense strife. Yes, let’s all 1000% help find a cure. But let’s not be irresponsible with our dialogue.
Well shit
Interesting how it happened after 2020. Did she get all the vaccines?
The particular disorder that Angelina has (Lafora Disease) was first formally described in 1911, before humanity had the understanding of its genetic causes. Angelina has one of the 100+ genetic conditions that cause dementia in childhood. Kids are born with these conditions and they're unrelated to vaccines or any environmental or lifestyle factors. They are severely under-researched and have attracted little attention or action until now. We're working to change that (which is why you’re hearing about it now).
2019 is not after 2020. I know numbers can be hard, but please think before you say something. 0:38
it breaks my heart. my ucnle recently died because of dementia. but why donate if there's no cure?
Very sorry to hear about your uncle. Thanks for your question. A cure hasn’t been found yet, but that doesn’t mean it doesn’t exist. It wasn’t that long ago that children with cancer weren’t expected to survive, however today in high income countries, 80% survive. The issue that kids like Angelina face is that childhood dementia is severely under-researched. We’re working to change that and to improve the availability of appropriate healthcare and support. We also advocate for childhood dementia to become health priority. There’s more information under a video description if you want to know more.
Im so sorry for her ❤
If there is no cure how can a donation stop it?
Hi, thanks for your question. No cure found YET. And the reason: childhood dementia is severely under-researched. Childhood dementia is caused by over 100 genetic conditions that have attracted little attention or action. We're driving more research, improved healthcare and support for kids and families, and we’re advocating for childhood dementia to become a health priority. There’s more information under our video description if you’d like to learn more.
@@childhooddementiainitiativ4040 Good luck, thanks for your attention
I... I didn't even know this was possible
Is she still alive? How is she doing
Umm question. In the video mentioned you that dementia isnt curable. What does the donation then?
Hi, thanks for your question. No cure found YET. And the reason: childhood dementia is severely under-researched. Childhood dementia is caused by over 100 genetic conditions that have attracted little attention or action. We're driving more research, improved healthcare and support for kids and families, and we’re advocating for childhood dementia to become a health priority. There’s more information under our video description if you’d like to learn more.
There are a LOT of things that are unacceptable in this world. Continue to pray for God's Kingdom to come, which it will, and it will be the solution to ALL problems. (Matthew 6:9,10; Isaiah 33:24, 35:5,6)
Everytime I hear about horrible things like this, I wonder: How can anybody believe in God? If he exists, he must be sadist.
I doubt there will ever be a cure. Life can be cruel. She's so beautiful and it's unfair she's stricken with this disease. My mom died of it but she was 95. Honestly no there won't be a cure.
Hi 👋 thanks for your comment . So sorry to hear about your mum. Dementia is just awful no matter the age, isn’t it? Childhood dementia is severely under-researched, however when research does occur, great progress is made. Treatments and cures can be found for children.
I just learned about it and couldnt agree more
Thats just so awful, Im so sorry
My wife works with children with disabilities. One of them is a girl with dementia. My wife sometimes updates me on how she’s doing and it genuinely makes me cry. She’s 14 and can barely talk now. We have two girls and it makes me hug them extra tight when I get home from work every day.
Please send our regards to your wife. And thanks for your awareness and care. We won’t stop working until kids have the treatments and support they need.
This is so horrible 💔
This makes me tear up we need to do more for mental health.
Thanks for your comment. This isn't a mental health issue but the result of terminal genetic disorders.
@@childhooddementiainitiativ4040 sorry for the assumption but my main thought is we need more awareness on things like this even “normal “ dementia sorry for the terminology I don’t mean to sound insensitive. But it’s so sad. Thinking that her family has to sit there and just wait for it to get worse as a parent that’s the sadest thing you could tell me, makes me want to go back to school just so I can be a scientist that could just help.
Ah yes, totally agree with you that more awareness is essential for dementia no matter the age. :) Thanks for your care and awareness.
what is childhood dementia and what it does??
Hi thanks for your question. Angelina has one of the 100+, terminal, genetic conditions that cause dementia in childhood. It’s estimated that 1 in every 2,900 kids are born with one of these conditions. Around half die before the age of 10, most don’t reach adulthood. A hallmark of childhood dementia is typical development, followed by regression as children's brains are progressively damaged. Recent research found symptoms on average start at around 2 and a half. But it varies between disorders and each child's experience can be different too. There's information under our video description if you'd like to know more.
Who asked you to add moments where you sing, you literally spoiled this video
heartbreaking, i hope she can get help and enjoy her life
i did not expect to see this today, absolutely heartbreaking 😭 to a kid too
Sending love and prayers to these families and their sweet children 🙏❤️
1:24 > what! :(
Shocking, isn’t it?
“There is no cure” “Donate to end childhood dementia” What will donating do if there is no cure 💀
Hi, thanks for your question. No cure found YET. And the reason: childhood dementia is severely under-researched. Childhood dementia is caused by over 100 genetic conditions that have attracted little attention or action. We're driving more research, improved healthcare and support for kids and families, and we’re advocating for childhood dementia to become a health priority. There's information under our video description if you'd like to know more.
To help try to find a cure obviously
I'm extremely sad and at same time, baffled because of this video. How this could happen in such short period of time?😥😥
It's very hard to see, isn't it?
bless her heart. she seems so confused and scared. peace and healing to this sweet young lady and all others combating this terrible disease. 💔