#spinal muscular atrophy

[embraceyourdestiny]

Big disability news in America!!

They’re raising the cap of money for disability SSI from 2000 to 10,000 and you can help!! Video above gives more information, and a link to the petition you can sign under it

Petition

Please share help and get the word out there! We can help improve so many people’s lives if this passes and it only takes a moment!

#og #disability #disabilities #disability care services #sma #spinal muscular atrophy #cure sma #ssi #physical disability #physically disabled #please add anymore tags so people can see

[spooniestrongart]

#spooniestrong #spoonie #August #awareness month #autoinflammatory disease #psoriatic arthritis #psoriasis #gastroparesis #behcet's disease #spinal muscular atrophy #immunization awareness

[tomberavecpanache]

RÉAPPARAÎTRE AVEC PANACHE

Bonsoir à tou.x.t.e.s !

Le dernier article publié sur ce blog date du 25 mai 2022... Je ne suis qu'une larve. (J'espère que vous avez la ref)

Voici une liste non-exhaustive de ce qu'il s'est passé dans ma vie depuis cette date :

Roadtrip de 10 000 km jusqu'à Trømso

Victime de mobbing

Concert de Lady Gaga à Paris

Fêter mes 30 et 31 ans (oh gosh)

Concert de Juliette Armanet

Nouveau petit chat qui s'appelle Catniss

Demission pour cause de mobbing

6 mois de chômage

12 mois de dépression

Beaucoup d'anti-dépresseurs

Voyage à Marrakech

Roadtrip de 2 000 km jusqu'à Amsterdam

Concert de Beyoncé à Paris

Voyage à New York

Concerts de Mylène Farmer à Genève et Nice

Paléo Festival pour Pomme, Rosalia, Pierre de Maere, Aya Naka-jauraisvouluquelleannule-mura

Commencer un nouveau job (omg yay)

5 injections de Spinraza

Ça va faire beaucoup à écrire. Non je ne vais pas TOUT écrire. Mais tout de même !

Oui, en effet, comme ça, visuellement, ça fait énormément de chouettes expériences sur un peu plus d'un an et demi... mais ne vous voilez pas la face car 80% de mon énergie a été utilisée pour garder tout juste une narine hors de l'eau lors de ma dépression.

But let's keep it light. I'm back bitches !

Gésiers et fluorescence !

#sma #amyotrophie spinale #handicap #spinal muscular atrophy #wheelchair #funny #architecture

[jensencaraballo]

**Journal Entry #1 - January 1, 2024**

*Dear Diary,*

Happy New Year! Today marks the beginning of 2024, and I'm already feeling the fresh energy of a new start. Last night was a blast – I welcomed the year with Lamynne and my mother. We really got into the festive spirit, enjoying some drinks and blunts. There's something about the laughter and warmth of family that makes such moments unforgettable.

Reflecting on 2023, it was a monumental year for me. Meeting the love of my life was undoubtedly the highlight. Love has a way of reshaping your world in the most beautiful ways, and I'm grateful for that. Professionally, I hit a significant milestone by securing a career that aligns with my passions and values. It's been a journey of positive transformation, and I'm proud of the strides I've made.

Looking ahead, 2024 is brimming with potential and dreams. My heart is set on some life-changing goals – moving to a new place, marrying the person I adore, and starting a family. The very thought of these milestones fills me with excitement and a bit of nervous anticipation.

This year, I'm also committing to a personal challenge – writing consistently. I've always believed in the power of words, and now, I'm channeling this belief into action. My plan includes publishing a book and starting a podcast. Sharing my thoughts and experiences with a wider audience is both thrilling and a bit daunting.

In addition, I'm starting these daily journal entries. It's a space for me to be raw and honest with my thoughts. I'll be using ChatGPT to give a creative spin to my entries – can't wait to see how this AI collaboration turns out! The idea of doing writing sprints excites me. Just pouring out my thoughts without any filters or time constraints feels liberating.

I've decided to post these entries on Tumblr. It seems like the perfect platform to share these personal snippets of my life. I'm looking forward to connecting with others who might find resonance in my words.

2024, here I come – with open arms, a hopeful heart, and a pen ready to capture it all.

*Here's to a year of growth, love, and endless possibilities.*

*Jensen Caraballo*

#journal #journal entry #disability rights #disability #love #diary #diary entry #entry #happy new year #new year #2024 #writing #writing sprints #spinal muscular atrophy #sma #nuerodivergent #nuerodiversity #neuromuscular #page one

[backgroundnoisewithaview]

I don't know this kid, you probably don't know this kid, but there's this boy in the echo called Junior Willoughby

His sister has set up a fundraising page so they can buy a wheelchair bike for him, because he's 14 and he's never been able to ride a bike and now he's missing out because his mates all ride bikes and he can't. The idea is someone sits on the bike and bikes, and he sits on the front, joining in.

I know people are struggling right now with the cost of living, but if anyone's got any spare money, please throw some this way to the fundraiser. Be a kind stranger on the internet and help this boy and his family out.

#GoFundMe #Spinal Muscular Atrophy #Fundraising

[kindsoulbuddy]

I just have to say, I’m not new to the internet.

But…the internet continues to disappoint me. There I am, I find wholesome content or whatever.

But people on the internet keep trying to ruin everything.

I’ve been watching Squirmy and Grubs videos for a while and I’ve been learning more about Shane and his writing career, his condition. Also his wife Hannah, etc…

….I go to look up more information about them and I see so many videos/reddit posts/Quora posts pop up, claiming that Hannah and Shane have to be faking their relationship.

That Hannah simply can’t be attracted to him, that she’s got other guys on the roster or whatever and/or she’s just in it for the money. Or she’s disgusting because she has a weird fetish. Or just how “something is off”.

My brothers in Christ…

Why is it so hard to imagine that an interabled relationship is real? They literally happen all the time everyday every where.

What has Hannah ever done to make you think she’s just in it for the $$$ and isn’t attracted to Shane? Oh I know, she committed the crime of being beautiful.

If you’ve ever watched Shane, he’s a really funny and interesting dude who has written books and accomplished quite a lot. But he committed the crime of being disabled I guess.

Please stop 🛑 collaborate 🤔 and listen 👂 to people who are disabled and in interabled relationships. People like Shane and Hannah are putting out information for you for free, trying to educate you and honestly they do it in an entertaining way. They don’t have to.

Honestly the main point here is to stop assuming what disabled people want or need and try to listen to those who choose to talk about it.

If you are skeptical or uncomfortable with some of this, I suggest making yourself familiar with spokespeople like Squirmy and Grubs, and checking out the resources they put out into the public.

I also suggest watching Molly Burke’s channel, a Blind woman who has been traveling the world spreading her message about the Blind community.

I’ve learned so much from her. I learned that I assumed a lot that I shouldn’t have assumed. And that’s the point of resources like these. You don’t know what you don’t know.

There’s a lot off innocent assumptions people make but the thing I’ve noticed about certain people that talk about their disabilities…they generally have a good amount of patience and kindness to people who don’t understand yet.

If you feel bad for what you said or did, try to do better and move on, don’t beat yourself up or anything. Just do better.

I just feel like, if you’re going to take the time to go on Reddit or Quora or Youtube and debunk people’s relationships, whom you don’t know and spread assumptions…take that time instead to put away your phone and go touch some grass.

But…before you put the phone away…

great video to start with:

#thank you for coming to my TED talk #squirmy and grubs #spreading awareness #Molly Burke #disabled community #blind community #spinal muscular atrophy #interabled relationship #take advantage of when people try to educate you before they get fed up with it #Youtube

[thetaoofty]

On this very special day, my 1 year anniversary on Tumblr, I feel it’s only appropriate to post my… (dramatic pause)… FIRST POST!!! 🍾

Better late than never? Let’s go with that. Please, hold your applause. I’m not sure what to write 🤔

I suppose I should introduce myself. My name is Tyler Parish. Most people call me Ty. I’m an artist, YouTuber, writer, stock trader and I live with a disability that causes me to use a wheelchair. I will be posting on Tumblr more frequently and will have some exciting new content to share with you. In the meantime, I invite you to checkout my website below to explore more. Thank you for joining me on this journey!

#miami #miamibeach #Thetaoofty #artwork #disability #disabled artist #spinal muscular atrophy #youtube #boston #philosophy #disabled writer #wheelchair #tattoos #author #spirituality #vlog #vlogger #travel vlog #disability blogging #dating

[loganberrryjam]

Happy Disability Pride Month!

I have Spinal Muscular Atrophy, or SMA, which is a genetic neuromuscular disability that means I lack the survival motor neuron, or SMN gene. Think about how people build muscle by working them out. My muscles are dumb and don’t do that so I basically have the strength of a toddler. I can’t hold my own weight because of this, so I use a wheelchair to get around. SMA doesn’t affect brain development, though, so I’m just like everyone else!

If you want to help out, visit the Muscular Dystrophy Association (MDA).

Fun fact: 1 in every 40-60 people are carriers for SMA, and about 1 in every 6,000-10,000 children are born with SMA.

#digital art #furry fandom #disability #disability pride month #spinal muscular atrophy #muscular dystrophy

[disabili-tea]

Tip for all u motor skill lacking girlies: an easier way to take a screenshot is hold the button on the side of your phone, then just type the command to Siri (i.e ‘Screenshot’) that way you don’t have to struggle pressing both buttons at once <3

#disability #motor skills #disability tips #iPhone #spinal muscular atrophy #just roll with it

[nightmaretour]

Being a part of a family that carries a genetic illness and having a completely unrelated disability can be wild sometimes. I'll have a new symptom that in some way resembles SMA and everyone starts freaking out like "OMG IT'S HAPPENING OH SHIT" and I'm just there calmly telling them that it's probably just because my brain is Fucked™ while internally panicking a little bit myself because that's like the fifth one now

#actually disabled #disability #sma #spinal muscular atrophy #The worst part is that the variant in my family isn't a known type and is really unpredictable #So there's not really an age where I'm definitely in the clear

[thelegend9798]

Plastins may promote disease when they act like workaholics and disrupt cellular environment

Plastins may promote disease when they act like workaholics and disrupt cellular environment

A family of proteins that have a role in ensuring many types of cells move and maintain their shape may promote disease when they act like workaholics and disrupt the cellular environment, new research suggests. The study increases scientific understanding of plastins, whose job is to bind to and bundle other proteins that can be thought of as the bones and muscles of cells. Having a better…

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#Actin #biochemistry #Cancer #Cell #Molecular Biology #Muscular Atrophy #Osteoporosis #protein #Research #Spinal Muscular Atrophy #Yeast

[rebelwheels-blog]

Spinraza Dose 17 & Other News

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#Art #Blog #Poetry #SMA #Spinal Muscular Atrophy #Strength #Thoughts #Writing

[intrainingdoc]

New on in-House, poetry by pediatric resident physician Holly Ingram, MD, MPH.

"[We] were pregnant with a child, Then we found out something wild.

I am a carrier of SMA..."

https://in-housestaff.org/we-had-a-choice-1979

#medblr #pablr #nurseblr #meded #medhum #poetry #prose #reproductive rights #sma #spinal muscular atrophy #medical

[rityrooroo]

Due to the enormous suckitude of ableism my best friend and I would like to start a consulting firm focusing on accessibility design in infrastructure.

I’d love to hear people’s opinions, design frustrations and ideas.

Pros:

We’re both women with physical disabilities.

She’s in a powered chair.

I have arthritis, occasionally use a crutch and am trying to fight my medical aid for a rollator. Due to the nature of autoimmune arthritis I also have chronic fatigue.

Pros:

It looks like we would be the only company in my city and province doing this.

And possibly the only company in the country that’s actually run by disabled people. (None of the other places’ websites mention it).

Our country has terrible accessible infrastructure (public and private).

Our constitution clearly states a right to freedom from discrimination based on disability/health.

We also have a constitutional right to dignity.

Cons:

Neither of us know anything about consulting.

The legal guidelines on accessibility are quite vague.

My background is in aviation and I’m studying engineering but I have no experience with construction.

And my friend is a journalist, radio and tv newscaster and motivational speaker.

Help?

#nothing about us without us #babeswithmobilityaids #babewithamobilityaid #arthritis #ankylosing spondylitis #wheelchair #wheelchair user #spinal muscular atrophy #ableism #construction #accessibility #disability #accessible design #engineering #architecture #bad design #consulting

[xenalous]

#donation #SMA #charity #medicine #pharmacy #siepomaga #spinal muscular atrophy

[healthcareporium]

Precision Medicine Unleashed: The Impact of Gene Therapies on Neuromuscular Health

In the realm of medical breakthroughs, nucleic acid and gene therapies are emerging as promising avenues for revolutionizing the treatment landscape of neuromuscular disorders. From approved therapies to groundbreaking advancements in the pipeline, the trajectory of treating conditions like Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA) is witnessing a transformative…

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#CRISPR-Cas9 #Duchenne Muscular Dystrophy #Gene Therapies #Gene Therapy #Neuromuscular Disorders #Neuromuscular Disorders Treatment #Nucleic Acids #Nucleic Acids And Gene Therapies In Neuromuscular Disorders #Precision Medicine #Spinal Muscular Atrophy