Father's Day - Jessica
2:21
Күн бұрын
2024 #LightItUp4HD Official Video
10:19
International HD Awareness Day
2:32
Mother's Day - Mandy U
1:23
Ай бұрын
Navigating Transitions to Care Homes
1:21:26
Agitation and Anxiety
1:15:22
4 ай бұрын
HDBuzz Global Research Update
59:25
YPAHD Nominations Deadline
1:12
8 ай бұрын
2023 Conference - John Stainsby
0:57
London Indy - Wrap Up Video
1:48
8 ай бұрын
2023 #LightItUp4HD Official Video
9:15
Animated Video: What is HD?
1:29
Жыл бұрын
Пікірлер
@kimsordyl
@kimsordyl 24 күн бұрын
wonderful man!
@jamesmiller510
@jamesmiller510 Ай бұрын
Thank you for words of encouragement. Think I saw you in New Orleans last year.
@benkalinowski5834
@benkalinowski5834 Ай бұрын
I have it to my dad died at 64 and now I have it I did the gene test and I was positive I went to my neuragist apt first time and he said I was twitching and asshole canceled my license They also told my dad was twitchy and they canceled his license he lived for 60 I feel like I'm gonna dye at 50 I'm 44 I may end my self I was a huge car guy and now I can't even drive a car if you test positive don't get the test done he was a cold no heart butthole My dad told me to never get the test because you would have a license and he was right I had a list of 100 symptoms and the only one was for twitchy corea
@debst4975
@debst4975 3 ай бұрын
God Bless you Tim. 💕🙏
@debst4975
@debst4975 3 ай бұрын
🙏❤️
@opalinapriebe627
@opalinapriebe627 4 ай бұрын
'Promosm'
@geztinsdale
@geztinsdale 5 ай бұрын
good luck Amanda, what ever route you take. Been in your shoes and took the test, thankfully it was negative but completely understand why others elect not to...
@omega36001
@omega36001 5 ай бұрын
what would Jesus do? What did He instruct us to do?
@lanadower7113
@lanadower7113 5 ай бұрын
EXCELLENT VIDEO. THNK YOU SO SO MUCH FOR SHARING. LEARNED A COUPLE THINGS I DIDNT KNOW. ❤
@cookiekilgore7021
@cookiekilgore7021 6 ай бұрын
Is Skip's Generations
@coraldell3091
@coraldell3091 2 ай бұрын
Hi Cookie, do you mean does HD skip a generations. No it doesn't, to my knowledge.
@cookiekilgore7021
@cookiekilgore7021 6 ай бұрын
😂 my mother and my brother died from Huntington's chorea
@katytaylor681
@katytaylor681 6 ай бұрын
Is there any update about Amanda? So sad hearing this video.
@LondenAndAutumn
@LondenAndAutumn 6 ай бұрын
This is a FANTASTIC video!!!!! Thank you!! I will be sharing 💙💜
@judydenio3179
@judydenio3179 6 ай бұрын
My friends mother had it, she and her sister died from it, her daughter and her three children have it. Where can one donate?
@tracymcgrath1192
@tracymcgrath1192 7 ай бұрын
Rip
@hollyirisdrucker2201
@hollyirisdrucker2201 7 ай бұрын
Amanda, God bless your mom and you and your family.
@catherinebirch2399
@catherinebirch2399 7 ай бұрын
I don't understand why people have children with such a dreadful disease running in their family.
@jenniferbowie2773
@jenniferbowie2773 7 ай бұрын
Stop having childrem
@coraldell3091
@coraldell3091 2 ай бұрын
Oh yeah, easy for someone to speak like this... Maybe stop commenting. Do you have children yourself ms Jenniferbowie ?
@jenniferbowie2773
@jenniferbowie2773 7 ай бұрын
You should do Otto see if your going to roll the dice on having kids! Just saying
@lauraruth6358
@lauraruth6358 7 ай бұрын
I watched my Uncle Bill die of this terrible disease. Turned into a person I didn’t even know! His son, my cousin got the disease and when he found out his daughter got HD. He shot himself!!!!!!! His daughter, Selena died of HD at the age of 20. It is truly a terrible, horrible disease!!!!!!!!!!!
@mavischadwick6445
@mavischadwick6445 7 ай бұрын
All thanks to DR ALAHO OLU on KZbin Channel who finally cured me and my wife from MS and ALS. He cures HPV, HSV, Lungs Disease, Cancer, HIV and many more.🎉
@mavischadwick6445
@mavischadwick6445 7 ай бұрын
All thanks to DR ALAHO OLU on KZbin Channel who finally cured me and my wife from MS and ALS. He cures HPV, HSV, Lungs Disease, Cancer, HIV and many more.🎉
@laurie113
@laurie113 8 ай бұрын
My father had ALS. He chose to die at his own time. I hope you and your mom have that choice as well.
@margaridabras9281
@margaridabras9281 8 ай бұрын
❤❤❤
@margaridabras9281
@margaridabras9281 8 ай бұрын
❤❤❤❤❤❤
@Cheng-jq6fc
@Cheng-jq6fc 8 ай бұрын
iht.. my 79yo dad has this disease 😢😢 *not remembering days * speech problems *depression *extreme mood changes *forgetting where he puts things ( cell phone. tablet. remote control & wallet) wtf😮
@BTSARMY-hn7gl
@BTSARMY-hn7gl 8 ай бұрын
That's so sad. Hope someone finds cure for it.
@user-iq6cc3df3l
@user-iq6cc3df3l 8 ай бұрын
I feel for Tim. Whenever I see someone with Huntington’s I think about “House” the TV show which is one of my favorites next to maybe “Seinfeld.” But I believe that “13” - I think she got that nickname as she was the 13th contestant in Hugh Laurie’s I’ll-advised reality TV “show within a show” (very funny by the way) - had Huntington’s on the show and she knew things would go downhill. It even depressed Gregory House’s character and he’s not what I would call a “touchy-feely” guy. I do hope that CRISPR might help Tim though. I’m certainly no expert but the somatic (?) or one-off solution can be tricky because I guess a researcher needs to extract a stem cell from the patient, make the gene modification, then reinsert the cell back into the patient and hope that it divides and most cells of a particular type - say, bone marrow - eventually take on that modified gene. It has helped one woman with Sickle-Cell Anemia as I believe maybe 75-percent of her genes were replaced in her bone marrow which creates healthier blood cells. At any rate there is hope for people like Tim. (I have at least two verified genetic autoimmune diseases and 23andMe has me listed me as at least having a greater chance of several more, which look “good” to me based upon symptoms. I believe most autoimmune diseases are genetically linked and it’s strictly how it’s manifested although it’s only my theory. But it’s Tic Toc for me and unfortunately I don’t think gene therapy will be mainstream until I’m long gone. Hopefully for Tim a solution is found.)
@user-iq6cc3df3l
@user-iq6cc3df3l 8 ай бұрын
I wrote it last night but I’m reading “Codebreaker” (CB). Besides pushing one political position too strongly - guess which one? - the book is fairly good although I wouldn’t recommend it unless you’re a Democrat. But I guess there is a germline solution that can eventually remove Huntington’s from the general population. I’m not sure if the somatic - I think that’s the one-off name for gene therapy - will work for this disease though. But from memory there’s only one gene that needs to be replaced which CRISPR can do in its sleep. Problem is, the healthcare industry in general operates as gatekeepers. They’re not really interested in making people healthier but rather withholding solutions to maintain their power and keep prices high.
@canadasweetie
@canadasweetie 8 ай бұрын
Articulated this message well. This is one of cruelest of neurological diseases. ALS and Huntington’s are the 2 most grueling ones.
@canadasweetie
@canadasweetie 8 ай бұрын
If she’s not able to live her life to the fullest, because in the back of her mind, she’s thinking she may have that disease it might suit her better to get the testing done know one way or another and that way she can live your life to the fullest. It would probably be best for her if she found out.
@nancybelli
@nancybelli 9 ай бұрын
Its one of the hardest diseases I've ve ever known, I hope that all of those who can get genetic testing, please try not to allow another soul to have to suffer, that or prayers for a cure.
@janetpapst4985
@janetpapst4985 10 ай бұрын
My Mother died from Huntington’s. Many of her relatives also had this disease. My sister has Huntington’s it is surprising how many people don’t know about it. It changed my Mother completely. Having to live with the possibility of it being passed on is hard and worrying that my children may inherited too.
@janetpapst4985
@janetpapst4985 10 ай бұрын
My Mother died from Huntington’s. Many of her relatives also had this disease. My sister has Huntington’s it is surprising how many people don’t know about it. It changed my Mother completely. Having to live with the possibility of it being passed on is hard and worrying that my children may inherited too.
@marievickers7848
@marievickers7848 11 ай бұрын
Please go get tested - you could be clear! Then you can relax and enjoy your life.
@fernemcallister6774
@fernemcallister6774 11 ай бұрын
So very sorry this has affected you.
@HighFashionQueen
@HighFashionQueen 11 ай бұрын
We never know the future, I understand you want to live your life not knowing. Love❤️
@maggiekhaja2833
@maggiekhaja2833 11 ай бұрын
Gréât News!
@TheTekkenhead
@TheTekkenhead Жыл бұрын
You have it. its 50/50 chance to developing symptoms
@bernieoconnell5515
@bernieoconnell5515 10 ай бұрын
My God what a rotten person you are.
@rickboer7715
@rickboer7715 Жыл бұрын
It was tough for you to share your story and I commend you for your courage
@garsu1229
@garsu1229 Жыл бұрын
💔heartbroken for these people😢
@petercrockford936
@petercrockford936 Жыл бұрын
I was thinking the other day that probably the best solution for HD would be touse CRISPR to introduce a stop condon mutation to the HTT gene and cause truncation of the gene with mRNA decay. I got this idea while researching about Laron Syndrome, which is caused by pathogenic stop condom and frameshift mutations to the GHR gene. Of course, the HTT gene is still essential to life, so the trick would be to make the mutation heterozygous. That would reduce protein levels by 50% to normal levels. I think that this is the sole solution because I honestly don't think that pharmaceutical approaches will work for many reasons. Someone should forward this to researchers.
@coraldell3091
@coraldell3091 2 ай бұрын
Well it may have to be you , that does that, forward the CRISPR idea.. I am sure that this is not a option at this point in time . Unfortunately.
@magdavanderlith925
@magdavanderlith925 Жыл бұрын
Please if you dont test dont have children as you yourself see and feel how devistating it is for the children.
@1111emmy
@1111emmy Жыл бұрын
It's hard to believe the voice of the people with Huntington's Disease have not made a bigger impression, that their voices have been heard, before they lose their ability to speak due to de-conditioning from muscle loss (not the cascade of mental deterioration depicted in the video), e.g..not enough strength in the vocal chords, leg/mobility function, etc. Sadly, something has changed over the years and key people are not influencing better outcomes in support and education around one of my favourite diseases.
@1111emmy
@1111emmy Жыл бұрын
Wow, disappointing. What a disaster of an advertisement. One would have hoped HD Canada would learn from the likes of Michael J. Fox and Parkinsons disease. Maybe, we get more dollars for research this way? It's a disgrace that the person will never be found in this narrative. This is misinformation of the worst kind, and only makes it easy to put a target on people's back to continue the discrimination and fear mongering. Yikes, peeps, hard to believe the medical establishment isn't close to getting this one more accurate... it's getting worse, not better. I have never liked the slogan, and revamping it in 2023 doesn't make it better, just makes me wanna buys some cigarettes (like the Canadian Hospital baby books from 1961 advertised).
@huntingtonsdiseaseawarenes850
@huntingtonsdiseaseawarenes850 Жыл бұрын
Huntington's Disease not huntington Disease......
@lauraganey6010
@lauraganey6010 Жыл бұрын
My youngest son was diagnosed at age 16 with juvenile onset HD, and he is now 29. He suffers severe pain in his knees and hasnt found a dr to help him. Very sad disease, and help from the medical community has been non existance in SC. Prayers to all effected by this horrid disease.
@rubychurch3466
@rubychurch3466 Жыл бұрын
Hideous disease, thank you Tim for teaching us. Thank you
@elizabethmiller5216
@elizabethmiller5216 Жыл бұрын
You look a lot better than the young man of 44 that I am trying to help. I found a treatment as I have a young man who I visit because he has been like a brother to my sons since his mother was diagnosed with HD 30 years ago and now he is quite bad himself and in care. The trouble is that although I got a copy of a mouse's brain free almost except one black spot of the tangles of protein, they have taken it off the net. Does anyone want to try cat's claw a rain forest bark as it seemed to help but they just suggested it might help with Alzheimer's and of course the drug companies want to make it into a drug to justify the high charges. God always provides a solution in the flowers of the field as it says in the bible. The patient has rejected it perhaps because his mind is already affected according to the medical people and I can't force him to try it.
@willylogan1811
@willylogan1811 Жыл бұрын
_Many don’t believe that Parkinson Disease can be reverse treated and cured, all they believe is that there is no cure but I am glad letting you all know that it is all wrong because my friends Mom that has being sick with Parkinson Disease for years just got her Parkinson Disease reversed and cured with a herbal supplements from DR MADIDA on KZbin😊😊😊😊_