Huntington's Disease hope for cure everyday

[Scottyskis2]

#ICYMI
The Huntington's Disease Society of America Awards More Than $2 Million To Expand HDSA Centers of Excellence Network to Sixty-Seven Sites Across the US!

Full Story: https://hdsa.org/news/huntingtons-d...e-network-to-sixty-seven-sites-across-the-us/

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily

 

[Scottyskis2]

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[Scottyskis2]

Not me now but I will get to this point with this fucken terrible illness
We in the same HD Facebook page
"""can people please pray for me I really hate this disease I can't walk and getting very hard to speak I can't understand myself""""

 

[Scottyskis2]

This Week in #HuntingtonsDisease Research!
Read the latest post at https://hdsa.org/blog/

THIS WEEK
- Celebrate #RareDiseaseDay with HDSA on February 28th
- Teva Announces FDA Approval for Austedo-XR
- Survey on Digital Data Collection

#LetsTalkAboutHD #HDSAFamily

 

[Scottyskis2]

Huntington disease talking
#LetsTalkAboutHD with Kate Miner! To learn more about #HuntingtonsDisease & the #HDSAFamily, please visit HDSA.org.

 

[Scottyskis2]

Huntington disease video

On this episode of #Help4HDTV we talk with Kevin, AKA Bubba, about the impact of chorea. Don’t forget to subscribe to our YouTube channel
"On this episode of #Help4HDTV we talk with Kevin, AKA Bubba, about the impact of chorea. Don’t forget to subscribe to our YouTube channel

#Help4HD #Chorea #HD #HuntingtonsDisease #BubHasHD

#Help4HD #Chorea #HD #HuntingtonsDisease #BubHasHD

 

[Scottyskis2]

Here is an update from Prilenia. We are hopeful and continue to watch closely for new info.

#Prilenia #HD #HuntingtonsDisease #Help4HD #HIPE #ClinicalTrial #PhaseIII #ClinicalTrialUpdate

 

[Scottyskis2]

Great huntingdon disease talk about new therapy and treatments:
""""One of the most exciting applications of CRISPR is in the treatment of genetic diseases. By using CRISPR to make precise changes to DNA, scientists can potentially cure or prevent diseases caused by faulty genes. This includes diseases like sickle cell anemia, cystic fibrosis, and Huntington's disease."

https://khikeroplitabil.xyz/click.php?key=fcvw2wau7i71pohq6s91&action=1f81b9e4b3f8ebd70da9ef5840cc0aab&placement=17101632&campaign_id=709331&c=1XWmGnsRFipd2jvYz9YHSD1e4Os%3D

 

[Scottyskis2]

Teva Announces FDA Approval for Austedo-XR Last week, Teva Pharmaceuticals received FDA approval for Austedo XR for treatment of chorea in people with HD and people with Tardive Dyskenesia (TD). AUSTEDO® (deutetrabenazine) was initially approved by the FDA in April of 2017. This drug, called a VMAT-2 inhibitor, interferes with how dopamine messages are passed between neurons in the brain to reduce symptoms of chorea in people with HD. Austedo XR is an extended-release formulation of the same drug. This means that people prescribed Austedo will have the option of taking the drug only once per day instead of twice per day, which could make treatment adherence easier. To read more: https://www.tevausa.com/news-and-me...e-extended-release-tablets-a-new-once-daily-/

 

[Scottyskis2]

HDSA is proud to announce the 2023 Request for Proposals for the #HuntingtonsDisease Human Biology Project! This 1-2 year funding mechanism is open to researchers around the world, and provides up to $75,000 of annual support for research conducted in collaboration with HD clinics across the globe.

Learn more at http://hdsa.org/hd-research/hd-human-biology-project/

#LetsTalkAboutHD #HDSAFamily

 

[SteezyRob]

Not me now but I will get to this point with this fucken terrible illness
We in the same HD Facebook page
"""can people please pray for me I really hate this disease I can't walk and getting very hard to speak I can't understand myself""""

That is awful. I'm so sorry for you, I will keep you in my prayers.

 

[Scottyskis2]

Huntington disease info about new therapy below
Thank you Novartis for being a Silver Sponsor at the 38th Annual #HDSAConvention! To learn more about Sponsorship, Exhibitor and Registration information, please visit https://hdsa.org/about-hdsa/annual-convention/

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily #neworleans #nola

 

[Scottyskis2]

We are grateful for all of those who came before us, paving the way to where we are now. We are grateful for those who continue to fight for treatments and therapies for us, and not giving up. We are grateful for boots on the ground like Factor-H, who continue to help some of the most under served community members. Jimmy and Ignacio we are grateful to you for all that you do. #HD #HuntingtonDisease #GratitudeDay #HDGratitudeDay23 #Grateful #FactorH #Help4HD #HuntingtonsDisease

 

[Scottyskis2]

HD info from people who talk about what it takes to deal with for other:
"Katrina Hamel joins Lauren Naomi for our 2nd episode of HD Uncut, and she doesn't hold back at all!

She was a child in a home where HD wasn’t talked about, had children before she knew she was at-risk, battled resentment to eventually care for her mom. Discussed the differences between caring for her mom who was unmedicated/unwilling to seek help, and her brother, who is quite opposite.

[http://tobtr.com/s/12210243](http://tobtr.com/s/12210243)

#HDUncut #HDStrong #TheRealHD #Help4HD #Help4HDLive #PodCast"

 

[Scottyskis2]

""THANK YOU to all of our brave community that participated in this clinical trial. We would never be looking at a completion of the Phase 3 data needed, as far as the patients enrolling and completing all visits, if it wasn't for all of you. Now we wait..."

Prilenia Archieves Last Patient Visit in Phase 3 PROOF-HD Clinical Study for Huntington's Disease

www.help4hd.org

 

[Scottyskis2]

Please share these studies with friends and family who might want to participate as well! Use this link to participate: https://rarepatientvoice.com/hdsa/

#HDAwareness #LetsTalkAboutHD #HuntingtonsDisease

 

[Scottyskis2]

Random request! Not sure if there are any card writers out there!? (FEEL FREE TO SHARE! )

For those of you who don’t know me/my story, Huntingtons Disease runs in our family. My grandfather passed away at 48, my mom 38, and my sister recently at 28. I have a younger brother (25) who is in a facility in NJ who also has Huntingtons. He was unable to be with family or at the funeral for my sister this past week. I know he gets pretty lonely and family tries to visit him at least once a month (but it’s only a 1-2 hour visit).

If anyone would be willing to write him an encouraging note w/ some scriptures, I would greatly appreciate it . He really has such a sweet heart, but Huntingtons has really caused so much pain (emotionally, physically, etc).

This is the last photo I have with him from July 2021 since we’re unable to take our phones in where he is

Jonathan Wallace
Building Larch A
301 Spring Garden road
Hammonton NJ, 08037

#huntingtonsdiseaseawareness #huntingtonsdisease

 

[Scottyskis2]

Check out our awesome April show lineup for Help 4 HD Live! New book released, health and wellness, HD Uncut community, and gene therapies! Join us on Thursdays and reach out if you’d like to tell your story on our podcast! #HuntingtonsDisease #HD #Help4HD #Help4HDLive #Podcast #HDAwareness

 

[Scottyskis2]

This week's HDSA research blog is live, and there's some very exciting research to be published soon. To read the full piece, go to HDSA.org/blog

#huntingtonsdisease #hdawareness #letstalkabouthd #research #newstudy

 

[Scottyskis2]

Nominations Now Open for the 2023 HDSA National Awards & HDSA Chapter and Affiliate Excellence Awards! #Celebrate our #HDSA community #heroes!
HDSA National Awards Nominations- https://fs22.formsite.com/hdsa/3dzr4uexot/index
HDSA Chapter and Affiliate Excellence Awards Nominations - https://fs22.formsite.com/hdsa/ch1jo5bcbk/index

#HuntingtonsDisease #Familyiseverything #HDSA