Huntington's Disease hope for cure everyday

[Scottyskis2]

"From some else asking great info in opinion about this fucken horrible illness and let everyone what we patients go through:
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Good evening, my name is Tamarra and I have been on this platform a few times in support as my sister in law has HD. I am a Filmmaker and I am working on documentary to promote awareness and support for HD patients and family members.

I'm looking for anyone who is able to share there story in hopes to create global change for more solutions and support. Also doing a case study on what needs within the HD community is being overlooked.

Feel free to message me or send a email to
Tamarra.thomas15@gmail.com

Log into Facebook

Log into Facebook to start sharing and connecting with your friends, family, and people you know.

www.facebook.com

 

[Scottyskis2]

Birdease Event Software

birdease.com

Every year my mom holds a golf tournament for my dad who passed away from HD and I have JoHD. We raise money to help pay for the University of Iowa to their HD research. Please help since we all know what this disease is but no pressure at all if you are in the Iowa area come check us out!

 

[Scottyskis2]

HDSA and RARE-X Launch HD Data Collection Initiative to Accelerate Treatments for Huntington's disease.

Press Release: https://hdsa.org/wp-content/uploads/2023/05/HDSA-RAREX-Collaboration-Release-Final-5.17.23.pdf

Community Letter: https://hdsa.org/wp-content/uploads/2023/05/HDSA-Community-Announcement-re-RareX-5.17.23.pdf

#LetsTalkAboutHD #HDSA #familyiseverything #HDAwarenessMonth

 

[Scottyskis2]

Very sad I know HD effects kids much worse than me this young girl needs all kinds of support

Eyes, Ears, Nose, and Paws help Olivia, who lives with JoHD, find her forever partner

Olivia Eiger is a social teen, who recently celebrated her 17th birthday and is planning to commemorate both her birthday and going into her senior year of high school with a trip to Disneyworld this summer. After school, she likes to watch her favorite shows, Charmed and Vampire Diaries, and...

www.help4hd.org

 

[Scottyskis2]

Huntington's disease: MedlinePlus Genetics

Huntington disease is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition). Explore symptoms, inheritance, genetics of this condition.

medlineplus.gov

My illness explained above in great detail

 

[Scottyskis2]

Former students has Huntington's disease and talking about how horrible it is "
#LetsTalkAboutHD with Laurie & Marie Clay

Former TCC student with Huntington's disease gets letter of achievement

Laurie’s father died with Huntington’s disease. Children of people with Huntington’s disease have a 50-50 chance of inheriting the disease which is incurable.

www.wtkr.com

#LetsTalkAboutHD #HDSA #HuntingtonsdiseaseVIOStQ4F64eTzqZEaKqNsdrXUwU6sOwJo0LofJ9w6CyRHytM

 

[Scottyskis2]

Laurie received a very special recognition and was interviewed by the local news! Learn more about her story below. https://www.wtkr.com/positivelyhr/f...VuvjNb4RC5XFz4NTWv97uDSVpp-LGYkMf26dHJ77X7qpQ

 

[Scottyskis2]

Tomorrow Thursday At 1 pm west coast time.
https://www.blogtalkradio.com/help4...Ea9rVf4tYZOjGSIMHh8kPTP9wM8noDjfVbzh3djW_-2wQ
"We are so excited about Help 4 HD Live's first episode of the HDF Young Investigator Series! Charlene Smith and Gong-Her Wu discuss their recent HD research using imaging to be able to look INSIDE the mitochondria to evaluate how HD affects the powerhouses of our cells. To learn more tune in Thursday at 1pm PST: https://www.blogtalkradio.com/help4hd

Can't make the live podcast? Listen later on your streaming service: Spotify, iTunes, iHeartRadio, or Blog Talk.

 

[Scottyskis2]

Not me but some who share this horrible illness:
""'It's my 39th birthday today. I have no friends to celebrate it with.. about a week ago I got a HDshirt-- https://moteefe.com/store/hd-shirt and I like it but most of the people didn’t like it. They have never tried to understand my feelings. I hope the people in our group will understand my emotions.

 

[Scottyskis2]

Huntington disease Dr find what causes the spark
And like brain on fire I agree with the link below

https://www.npr.org/sections/health-shots/2023/06/19/1182881226/huntingtons-spreads-like-fire-in-the-brain-alzheimers-parkinsons

 

[Scottyskis2]

uniQure Announces Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington's disease.

Community Letter: https://hdsa.org/wp-content/uploads/2023/06/2023-06-21-AMT-130-IA-Cover-Letter-Final.pdf

Press Release: https://hdsa.org/wp-content/uploads/2023/06/PR_AMT-130_June21_Update_FINAL_06.21.23.pdf

 

[Scottyskis2]

""This has got to be one of my favorite #HDUncut shows thus far. Chef Chris Brown joined me again to discuss his recent visit to Wave Life Sciences, but we got into our feelings and discussed so much more than that - and it was powerful. TW: We do discuss suicidal thoughts and other things that could be triggering, so please be aware of that. ""

HD Uncut, Ep. 4 with Chris Brown

HD Uncut, Ep. 4 with Chris Brown

www.blogtalkradio.com

 

[Scottyskis2]

On Thursday, Chef Chris Brown and I spent over an hour talking for the #HDUncut series. This was truly an inspiring show for me. Chris is so honest and authentic.

There are so many great parts to the show, so I'm thinking of doing multiple highlight videos, but we will start with this one to give everyone an idea of our conversation.

To listen to the full episode, please visit [http://tobtr.com/12241358](http://tobtr.com/12241358)

Enjoy!

 

[Scottyskis2]

Last Chance for Scholarship Applications!
Do you have a #HuntingtonsDisease research abstract that you’d like to have considered for presentation at #HSG2023?

The 2023 Shoulson Scholarship is awarded to one recipient and covers meeting registration for the 2023 HSG Annual Meeting in Phoenix, two nights lodging at the meeting venue, airfare up to $600, and a $150 travel stipend.

Apply Now! https://bit.ly/46ovXIH

 

[Scottyskis2]

Live HD video of people talking about the horrible illness

2023 July HIPE Virtual | Help 4 HD Virtual HIPE- “HD Community Videos- HD Experts React.” | By Help 4 HD International | Facebook

Help 4 HD Virtual HIPE- “HD Community Videos- HD Experts React.”

fb.watch

 

[Scottyskis2]

The new huntingdon disease shower pictures for the great nurse home
In Rhinebeck ny nursing home for 6 weeks now just move to HD wing on 5 floor when it opens last week

Huntington's Disease Center | Medical, Emotional & Psychosocial for HD | ArchCare

ArchCare is a pioneer in caring for the unique medical, emotional and psychosocial needs of people living with (HD) and other neurodegenerative disorders.

www.archcare.org

 

[Scottyskis2]

HD talk Tuesday July 4
At 2pm ny time zone
We hope you will join us at our HD Caregivers' Support Group - Tuesday 2pm PST. Inbox us for the zoom link or contact us here: https://www.help4hd.org/contact #Help4HD #HDCaregivers #HuntingtonsDisease

 

[Scottyskis2]

Great HD news:
"Huge news today (In my opinion). The NIH (National Institute of Health) has awarded 22 million to a new initiative dubbed "Correction of Neurological Disease via Allele Specific Excision of Pathogenic Repeats”.

One of the goals of this is to bring a CRISPR based therapeutic to clinical trial within 5 years for Huntington's Disease!! "• Project I will utilize AAV-CRISPR techniques to address Huntington's disease, with Krystof Bankiewicz, MD, PhD, as primary investigator. This is the flagship/trailblazer project, which is most likely to yield an approved Investigational New Drug application within 5 years."

You can read the full details here and I'll be happy to answer questions but they're finally aiming to bring CRISPR to people in a relatively quick timeframe for Huntington's Disease! As many in the group know, I am -extremely- excited about the potential of CRISPR to cure HD and right around the corner is a more advanced version called Base Editing.

I know 5 years sounds like a long time but it could come even sooner and I was trying to be conservative in my hopes so wasn't expecting something like this to come about for another 5 years and we'd have it within 8-15 so this is huge to me! Everyone keep your fingers crossed everything goes smoothly for this and we can remove those expanded CAG repeats in everyone!

Read the full story here: "

$22 million NIH award will accelerate ‘CRISPR’ research at UC Berkeley, Ohio State

With a grant totaling $22 million from the NIH’s Somatic Cell Genome Editing (SCGE) program, researchers at the Innovative Genomics Institute (IGI) at UC Berkeley, The Ohio State University Wexner Medical Center and College of Medicine and UC San Francisco are developing new approaches to treat...

wexnermedical.osu.edu

 

[Scottyskis2]

We are SOOO excited to partner with HD Reach and HDYO (Huntington's Disease Youth Organisation) for our Youth & Young Adult Track during HIPE, Michigan. Anyone 35 and under is welcome to join in on the video game competition and other sessions. For more info and to register, please visit: www.Help4HD.org

#help4hdhipe2023 #Help4HD #HDYO #HDReach #GameOverHD #VideoGames #Gamer #Youth #YoungAdults #HIPE #HuntingtonsDisease #HD #JHD #JuvenileHuntingtonsDisease #Michigan #Detroit

 

[Scottyskis2]

#LetstalkaboutHD 38th Annual HDSA Convention Clinical Trials Showcase

To learn more about #HuntingtonsDisease, please visit HDSA.org.
#LetsTalkAboutHD #HDSAFamily #HDSAConvention #StrongerTogether #OneHDSA