Huntington's Disease hope for cure everyday

[Scottyskis2]

5 Stages of Huntington's Disease.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

May 7th is #BrainDonationAwarenessDay Brain tissue is critical to advance research on preventing and treating neurodegenerative disease; this day helps raise awareness about the importance of brain donation to advance scientific efforts that will benefit all people affected by neurodegenerative disease.

A brain donation is an invaluable gift that anyone can make to further how we understand the brain and different diseases that affect it, like HD. To learn more about brain donation visit HDSA’s website, https://hdsa.org/find-help/healthcare-and-future-planning/brain-donations/ or https://hdtrialfinder.org

#HDSA #HDAwarenessMonth #Familyiseverything #Huntingtonsdisease

 

[Scottyskis2]

In honor of Nurses Week, we’d like to take a moment to recognize and celebrate the incredible contributions our nurses make every day in the lives of the ArchCare community. Nurses are called by God to provide care and comfort in challenging situations, and they do so through touch… a listening presence…a willing and compassionate heart.

As the backbone of ArchCare’s healthcare system, our nurses work tirelessly to care for thousands of vulnerable patients, advocate for their needs, and provide kindness and empathy during some of the most difficult moments in their lives. Their dedication and expertise make a real difference in the lives of our patients and their families. Thank you for all that you do, 24 hours a day, seven days a week. Your hard work and selflessness inspire us all. I am grateful for the vital role you play in our healthcare system. Happy Nurse's Week! #TogetherWeCan #NursesWeek

 

[Scottyskis2]

The stuff is in me it's not a brain fart,or a huntingdon disease side effect it started a long time ago I wish I was in. heaven with dad and mom all the time not killed my self but what inside me is I know if they do the camera procedure. in my mouth and teeth they will see when I tomorrow your l never want to be like this is not any thing that does not belong in me it's foreign hair the. reason the dentist would see it now because I feel more in my teeth and lips if they with, experience dentist not from smile place saw me .
The Dr dentist from there did not look in mouth while I had. the cleaning from the assistant dentist maybe sue them smile place if I go to heaven soon I love you but this is my life I, been dealing of since it started I just want a camera too see it before my body gives up.

 

[JimG.]

Visited Scotty about a week ago...HD sucks but he handles his burden with grace and dignity. As you can tell from his last post it really fucks with your head.

He enters the HD assisted living program at Archcare at Ferncliff tomorrow. That's located in Rhinebeck which is a beautiful location on the eastern banks of the Hudson. Also closer to where I live. He has a loving and supportive family. I have spoken to his Aunt Barbara and he is lucky to have such a good support system.

Hang in there buddy a new adventure begins.

 

[Scottyskis2]

Listen on Blogtalk tomorrow at 1pm PST to discover more about the recent results from Prilenia as Seth Rotberg joins Lauren Holder this week on #Help4HDLive. https://www.blogtalkradio.com/help4hd

To review the Prilenia team's recent letter to the HD community, click here: https://bit.ly/3HYGZd7

 

[Scottyskis2]

Every child of a parent with HD has a 50% chance of inheriting it.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

Just went outside for 20 minutes with a good book and read it under the galzbo nice low humidity day today..
Hope everyone here has good day to
Join us Saturday, May 27th, at South Haven Brewpub, for our annual HD Awareness Month performance fundraiser from Shelby Lentz, Champions for HD Founder/President.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠ #BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

I I'm HD nurse home in Rhinebeck ny a few miles from Catamount ski Arar and snow boarding and bike for a week this Tuesday some crazy nees always follow me


my room mate been keeping me up since I got here he blast the music and TV all night long and is not person at all then. today he tried too punch me in the chest and he was shaking to much so he missed the , state police came and took the report but I now on the 2 floor .
The police took the report I in room 2028.
Now on the 2 floorI think it's ny stupid stuff but glad we are permanently separated he sniff something all night long the day staff can't do anything they all don't like his attitude and the only one doing that I think I got him as roommates because he the worse person and I was the first new client
I be down here much nice and my own bathroom and much, nice down here

Up he tried to punch me in the room this morning
I called the state troop and they came and took the report but said he didn't recommend pres charges because they were no witnesses and he punch but he missed because he was shaking from what ever drugs he was on
Yes everything is much better now we on different floors and his elevator is different than mine

 

[Scottyskis2]

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

#LetsTalkAboutHD with the HDSA Massri Chapter

Springfield golf event raises money for Huntington’s disease research

The Springfield Country Club hosted its Golf for a Cure event, part of an effort to recognize lost loved ones and inspire people to join the fight against Huntington disease.

www.wwlp.com

#HDSA #HDAwarenessMonth #Familyiseverything

 

[Scottyskis2]

Dr. Benjamin Gilmer joined me today to talk about raising awareness for HD and fighting for Dr. Vince Gilmer through his new book, "The Other Dr. Gilmer". Take a listen: [http://tobtr.com/12228285](http://tobtr.com/12228285)

 

[Scottyskis2]

HD trials info:
"Hi Denee,

I answered a similar question from the other thread but thought I'd repost here:

I do! I also recently presented and have a recording of the trials I think are worth watching in 2023 for news. You can find that here:

HDSA also has a Therapies Pipeline page, which has an impressive amount of trials and shows the work being done BUT - it isn't complete! There's new stuff popping up all the time and even I, who look at it every single day, am losing track of the number of trials and incoming therapies. The pipeline on HDSA doesn't include stuff like CRISPR, which I mentioned in the webinar!

Pipeline link: https://hdsa.org/hd-research/therapies-in-pipeline/
"

 

[Scottyskis2]

Juvenile HD accounts for 5-10% of all Huntington's Disease cases.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

Are you attending HDSA's 38th annual convention in New Orleans next week? We are!

Find our team members, Brett Kinsler, Kristin Keyes, Sam Frank, and Sandra Kostyk, or reach out in advance to schedule time to meet (info@hsglimited.org).

Annual Convention - Huntington's Disease Society of America

REGISTRATION | TRAVEL INFORMATION | HOTEL INFORMATION | CONVENTION SCHOLARSHIP INFORMATION | THINGS TO DO IN SPOKANE Register by March 31 to receive the special Early Bird Convention rate. Early Bird Rate Full Rate Late Rate 1/3-3/31 4/1-4/30 5/1 & After Adult Individual* $225 $275 $350 Family...

hdsa.org

#HDAwarenessMonth #HuntingtonsDisease

 

[Scottyskis2]

Join us TOMORROW at South Haven Brewpub, for our annual HD Awareness Month performance from Shelby Lentz, Champions for HD Founder/President.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

Here is our lineup for June! We've got some great shows - including a new monthly series! Thanks to the Hereditary Disease Foundation, we will be showcasing young investigators and their research in HD.

We will also continue our HD Uncut series - This is an uncensored show for the HD community to come on and talk about whatever they want - struggles, frustrations, blessings, tips and tricks, whatever! If you are interested in being on the HD Uncut series, please email me at lauren@help4hd.org.

 

[Scottyskis2]

Our guest this week is Henk Shuring sharing updates from Prilenia on Help 4 HD TV! Join us Friday at 9am PST. https://www.youtube.com/channel/UChX-xz4ARlpXjQ352IIpERw

 

[Scottyskis2]

Welcome parent/caregiver of a child with #JHD. We would love to see you at our virtual #support group tomorrow at 5pm PST. Inbox us for the zoom link or contact us here: https://www.help4hd.org/contact #Help4HD #JuvenileHuntingtonsDisease #Caregivers