Tim's Story - Huntington disease and young onset dementia

Welcome to Huntington disease (HD) Awareness Month! We believe in shining a light on HD all months of the year, but May marks a time when we as a community really go all out. We do everything we can to educate about HD, fundraise, and provide support.
Tim Irwin talks about advocating and raising awareness in this video about Huntington disease and early onset dementia - please take a moment to watch. Our thanks to the Alzheimer’s Society of Canada for partnering with us on this endeavour.
Thank you so much Tim - you are a passionate advocate and an inspiration to others, modelling healthy habits and a positive attitude.

[@robertlaycock6483]

So well-done Tim! So many of us can be proud of you for this amazing awareness video! Heartfelt thanks!

[@lauraganey6010]

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.

[@anne-mariemcinnis9143]

Tim, I hope you'll receive my message. I so appreciated your video. You are quite eloquent when verbalizing part of your life with HD and early unset dementia. Thank you for talk! I will 🙏 include you in my prayers, handsome Sir.

[@kimsordyl]

wonderful man!

[@danmiddleton4703]

Thank you for sharing your story Tim, you are an inspiration. Wish we could get together more! Take care my friend

[@schumachersbatman5094]

We want more interviews with Tim. He's a great spokesperson.

[@lanadower7113]

EXCELLENT VIDEO. THNK YOU SO SO MUCH FOR SHARING. LEARNED A COUPLE THINGS I DIDNT KNOW. ❤

[@jojoFranklin]

What a wonderful man.

[@DawnHarry-k7q]

Wow you and I both! Everything you’ve said is how HD has impacted me. It’s a complex disease. Thank you.

[@visionvixxen]

Thank you for being brave enough to share . 🙏 I am praying for you….LISTENING is so important…. Understanding and wanting to “get” those you love.

[@dorisjohns8124]

Thank you sir. Great video. My grandson just learned he has HD. Age 26. 55 repeats. Systematic.

[@rubychurch3466]

Doris, that’s awful. So sorry for you all

[@lauraganey6010]

Very heart breaking. My son was diagnosed at 16, and is now 29.

[@holsen8269]

Thanks for sharing your insights. Bless your heart.

[@canadasweetie]

Articulated this message well. This is one of cruelest of neurological diseases. ALS and Huntington’s are the 2 most grueling ones.

[@tommac5411]

Great job Tim. This video is very helpful.

[@garsu1229]

💔heartbroken for these people😢

[@megsley]

the idea of using his left hand to challenge his brain is so clever!

[@Brosepha]

I hate this disease its such a horrible thing to go through.

[@Oklahoma-Dreaming]

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.)

[@taracat7723]

This guy seems better equipped to function in work than a lot of the so called assholws I've seen out thwre

[@fernemcallister6774]

So very sorry this has affected you.

[@rubychurch3466]

Hideous disease, thank you Tim for teaching us. Thank you

[@allanstout7956]

I had a diagnosis 4 years ago and i know how had its ginna be me dad had it so i know the score.... im.still scared tjough that i forger the faces and names of the people i love😢😢😢

[@wendyqallab6906]

So cruel and unfair.

[@Kbax3614]

Unfair? Yes. Cruel? Disease gets more severe with each generation. He is doing great still. I hope his children isn’t affected.

[@elizabethmiller5216]

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.

[@coastalmaine]

You are so, so well spoken. Best of everything to you and I hope that someday there can be a cure for this terrible disease.

[@jamesmiller510]

Thank you for words of encouragement. Think I saw you in New Orleans last year.

[@debst4975]

God Bless you Tim. 💕🙏

[@Jonakaiii]

This guy has HD?!? If he didn’t tell you, you wouldn’t know. Crazy

[@margaridabras9281]

❤❤❤

[@Cheng-jq6fc]

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😮

[@Oklahoma-Dreaming]

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.