#@hdsa

[cahootings]

holding this one very close to me what the fuck. what the fuck.

[hdadvocate]

Huntington’s Disease Medications: What’s New, What’s Now, and What’s Next

Once again, I share about HOPE for a cure or therapy for Huntington’s disease.  At this time, there is so much HOPE for the many therapies being managed for Huntington’s disease (HD). I found a great article from the website GoodRxHealth, Huntington’s Disease Medications: What’s New, What’s Now, and What’s Next.  Please take time reading it because there are so many promising clinical trials,…

[noelverwhelmed]

Noel last night at Kate Miners HDSA event x

[shamelessrabbithole]

I‘m so glad we didn’t have to wait that long to see Noel again. His funny dance moves made my morning. 😍

I know that he got involved with the HDSA through Kate but do you think he has a personal connection to it (maybe friends or family with Huntington‘s disease like actors Jason Ritter and India de Beaufort)?

Wow. This is quite a thing to behold. I’m not even sure what to say. I wish we had some context! He looks like he’s doing the “Carlton” from Fresh Prince, only I have no idea why!

As for your question, I’m pretty sure he learned about Huntingdon’s Disease through Kate and got involved with helping the charity through her while they worked together on season ten of Shameless. He’s said on video recordings that he and Layla learned about the illness from her and prior to that didn’t know a thing about it.

[tcr55]

Two approaches to architecture in Sydney.

At first light on a clear day, you can see Harry Seidler’s Horizon up the hill in Darlinghurst. And down by the harbour, the Wharf Terraces by the HDSA Group in Woolloomooloo.

If I could afford either, I’d be down by the water.

[radpandamiracle]

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[huntingtonsimpact]

Resources

Bates, G., Tabrizi, S., & Jones, L. (Eds.). (2014). Huntington's disease (No. 64). Oxford University Press.

Broderick, P. C., & Blewitt, P. (2020). The Life Span: Human Development for Helping Professionals (5th ed.). Pearson Education.

Cleveland Clinic medical. (n.d.). How to do the heimlich maneuver. Cleveland Clinic. https://my.clevelandclinic.org/health/treatments/21675-heimlich-maneuver

Craig Hospital. Neurorehabilitation Center Colorado: Craig Hospital. (n.d.). https://craighospital.org/

HDSA: Huntington’s Disease Society of America. Huntington’s Disease Society of America - Family Is Everything. (n.d.). https://hdsa.org/

Huntington Physical Therapy, HPT - Huntington, WV & Barboursville, WV. HUNTINGTON PHYSICAL THERAPY. (n.d.). https://www.hptservices.com/

Physiotutors: Online learning for physiotherapists. Physiotutors. (2024, May 22). https://www.physiotutors.com/

[theviolettulip]

OHHHHHHH MY GOD, YES YES YES YESSSSSSSS!!!!

I just about DIED of excitement, USOPP! IT"S USOPP!!! There is so MUCH that can be done with this AU and jdfghane sgfdsnhf ,khadmfn hdsa,mkhafmhsndkfh dsnf bdsf I'm gonna EXPLODE just thinking about it!!! Plz say you'll write more installments of what you think might happen next! I am VERY invested<333

One Piece isekai story but. different

So there's a teenage boy. Reads One Piece. Loves the battles, the characters' strength and determination, the wildness of the world and all the adventures.

One day, as often happens, he gets hit by a bus and reborn into the One Piece world.

It takes some time for him to grow up enough to realize it's the One Piece world - he was reborn for real, and his brain takes a bit to catch up to his first-life memories.

His new home is a small, uneventful village in the East Blue, not brushed by the main plot, and our isekai protagonist grows up wondering what to do with this second chance.

Because on the one hand, just being born into One Piece did not automatically give him main character energy. He doesn't have a Devil Fruit and has not managed to figure out how to become a powerhouse like Zoro or Sanji. Probably the smart thing to do would be to take his out-of-the-way location as a sign and avoid anything that looks like Plot.

On the other hand... he's in One Piece. There's so much cool stuff out there. This is everything he dreamed about the first time around. This is the best chance he'll ever have to become someone like Luffy or Zoro, the kind of person he's always wanted to be. How can he not take it?

This bounces back and forth in his brain the whole time he's growing back up. Even staying home doesn't protect you from loss, he learns when he becomes an orphan - this is both an argument for and against going anywhere.

And then. One day in his teens.

Luffy lands in the village.

Our protagonist recognizes him from hundreds of chapters and hundreds more episodes, with his crew by his side - or the beginnings of his crew, at least, there's hardly any of them. This must be early in canon.

Of course he makes friends with them. How could he not? They're the Straw Hats.

And, of course, they uncover an evil plot threatening his village - and, wait, he actually vaguely remembers this arc? Though it didn't go this way in the manga, because he wasn't there...

Huh. He's getting to affect a little bit of canon. And while our protagonist is more focused on making sure nothing goes wrong for the village and people he's grown to love, part of his brain is fanboying about that. He's gotten his brush with the real Straw Hats! He's gotten an adventure with them!

And he does okay. They save the day, and he even helped, and Luffy calls him a friend and even Zoro gives him approval. The rush is kind of a lot.

It makes things click. Our protagonist finally lets one side win in his mental argument. He'll never be happy if he doesn't go out and experience this world, reborn normie or not. He packs his bags and decides to set out, saying goodbye to the Straw Hats on his way. Maybe he'll even get to see them again--

Wait.

Why are they telling him to board their ship. Why are they asking him to join the crew.

This is way beyond a little canon divergence, and he knows he should say no, knows trying to insert himself into the main characters is insane...

But they want him. Luffy wants him to join his crew, and even a day in his company has made him feel like not just a character but a friend. Who can say no to Luffy?

...And, actually. He's already affected the plot. They got a ship out of this adventure, and he is 90% sure that didn't happen in canon. They tended to swap their ships out a lot in early arcs, so maybe it won't have a lasting effect, but...hey, maybe he won't either! Maybe this is just a little extension of his brush with greatness.

Maybe he can push his luck anyway.

So, with a laugh and a cheer, our isekai protagonist boards the Going Merry and asks - just to see - if he can be the captain.

Luffy says no, obviously, but that's okay. Usopp knows he was never supposed to be here - he's happy just to get a chance on the crew.

[d0nutzgg]

Want to Support My Research and Get Some Cool Subscriber Only Content?

Hey everyone, so I know a lot of you really love my programming stuff. If you want step-by-step tutorials on how to make certain types of machine learning models, python projects, and other awesome subscriber only content, while supporting my research and helping me donate to a good cause (15% of earnings will be donated to the HDSA to improve Huntington's Disease patient's lives as well as fund life changing research being funded by them right now, I will include the donation receipt each time I donate!), you can now subscribe to my Post+ subscription! It would mean a lot to me and I will ALWAYS provide proof of donation as well! I want to make a change, and you can help. I will start posting stuff for my Post+ subscribers as soon as I get my first Subscriber (I want to make sure you're in this with me before I start creating a bunch of stuff!) I will be gone tomorrow because of my teeth issue but I will be home tomorrow night. Anyways, it would mean a lot and I promise to give you an inside look at what I do and how to do everything I do!

Love you all, you are super amazing people!

[guncelkal]

Power Cord Lanberg CA-HDSA-11CU-0015

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[petnews2day]

S.Rothwell & son - Young Bird 2023

New Post has been published on https://petn.ws/hDsa

S.Rothwell & son - Young Bird 2023

S.Rothwell & son kindly donate a 2023 Young bird We will offer a 3rd round young bird ( ready april approx ) this young bird will be a half bro/sis to our RPRA sprint award winner  Sire: New Limo  *** Direct Co Verbree*** SIRE OF 1st RPRA WR SPRINT AWARD  New Limo is a Top […]

See full article at https://petn.ws/hDsa #BirdNews

[hdadvocate]

The HDSA San Francisco Bay Area Chapter thanks Stanford Medicine, Gold Sponsor for the upcoming Huntington's disease fundraiser at Campbell Park on June 17, 2023. Please register and help in the fight against this incurable disease here: https://sanfrancisco.hdsa.org/events/2023-team-hope-walk-san-jose-ca

[wrdn-tabris]

What is the Huntington’s Disease Society of America?

The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. To learn more, please visit www.hdsa.org.

What is Huntington’s Disease?

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes the disease. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Huntington’s disease is described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

About Team Hope

Team Hope is HDSA’s largest national grassroots fundraising event. Thousands of families, friends, co-workers, neighbors and communities walk together each year to support HDSA's fight to improve the lives of people affected by HD and their families. From forming a team, to sponsoring an event, to volunteering, you too can help make a difference in so many lives. Join Team Hope for HD, and help us provide help for today, hope for tomorrow! Learn more by visiting www.hdsa.org/teamhope.

Hello,

So, my cousin has Huntingtons, and every year my family does a walk for charity to raise money. No one has to donate but if anyone does it’ll mean the world to me. Kayla’s like a sister to me and I love her a lot.

link

[shamelessrabbithole]

I know this has literally nothing to do with your back and forth you had with anon about Layla and Noel…but Melanie L was at the HD party. She is present in both videos that we have of Noel (in front of the video with him dancing-she is playing on her phone) and sitting next to a child on a chair in the video where he is talking to the man.

so…her and Jason are prob fine:) hahah again…nothing to do with the conversation I just noticed her in a lot of the pictures/videos cause I like her a lot!

Oh, interesting! Is this her in both videos?

I think this might be Alex Shekarshian standing behind Noel, also. 👇🏻 What’s weird to me is how this event is intended to raise awareness about the disease, but all of these high profile people attended and very few of them posted about the event at all. Melanie doesn’t follow the HDSA but her husband has been helping organize the fundraisers practically since the foundation began hosting them.

Anyway, thank you for the callout! I’m glad she was there too. 😊

[huntingtonsimpact]

HD Care Facilities

As the disease progresses, it may get to the point where the family is unable to act as sole caregivers for the patient any longer. In these times, it may become necessary to seek a care facility in order to ensure that their loved one is safe and well cared-for.

Specialized HD clinics, like those recognized by the Huntington's Disease Society of America (HDSA) as Centers of Excellence, play a vital role. These clinics offer comprehensive care tailored specifically to HD patients, including expert medical management, therapies, and counseling aimed at enhancing quality of life and addressing specific symptoms of the disease. They serve as hubs where patients can receive specialized treatments and support from teams experienced in managing HD.

Home care services are another valuable option for HD patients. These services provide both medical assistance, such as administering medications and managing symptoms, and non-medical support, such as help with daily activities and emotional companionship. Home care allows patients to remain in familiar surroundings while receiving personalized care that meets their individual needs. It offers flexibility and can be adjusted as the disease progresses, ensuring comfort and continuity of care.

Long-term care facilities, such as nursing homes and residential care homes, provide round-the-clock support and skilled nursing staff trained in managing HD symptoms. These facilities offer a safe environment where patients can receive ongoing medical care, assistance with daily tasks, and social interaction with other residents and staff. They are equipped to handle the complex needs associated with HD and provide families with peace of mind knowing their loved ones are receiving comprehensive care in a supportive setting.

For patients in advanced stages of HD or those needing end-of-life care, hospice and palliative care programs offer specialized support. These programs focus on managing symptoms, enhancing comfort, and providing emotional and spiritual support to both patients and their families. They ensure that patients receive dignified care that aligns with their preferences and values, emphasizing quality of life during this sensitive time.

HDSA

Mestre, 2017

[wehaveaface-global-hubs]

WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!