Список из самых популярных хештегов по теме #SPINALMUSCULARATROPHY

here’s a picture of me being canadian and not wearing a coat to get your attention, cause i need to ask for your help with something really important! - if you’re new here, i have something called spinal muscular atrophy. it’s a genetic disease that makes my muscles get weaker over time. up until recently, there was no treatment for SMA. now, there is. it’s called spinraza, and it’s been proven to help people maintain and even gain muscle strength back. it’s been approved and covered for patients in 45 countries. - the CADTH (canadian health board) recently made the recommendation not to fund spinraza for anybody over the age of 12. even while there are adults in so many other countries receiving the drug and seeing amazing improvements, canadians like me with SMA are being completely ignored. - spinraza is INCREDIBLY expensive. we know the drug exists, we know it works, but it is simply unavailable to us. while i see my body get weaker each day, i know that there is something that could be helping me. this is where i need you. - provincial governments are not legally obligated to follow the recommendation of the CADTH, but they will unless they are given a reason not to. if you could take 5 minutes out of your day, you would be helping me and thousands of others get access to life saving medication. HERE’S WHAT I NEED YOU TO DO: - the link in my bio will take you to a sample letter/email, which only needs a name, address, and date filled out. this letter needs to be sent to your local MLA, to make them aware that they need to act quickly. you can add/edit/remove any part of the letter, or you can even write your own. all the letter needs to say is that you believe it is incredibly unfair for the government to deny adults and teens with SMA access to spinraza, and that you are disappointed in the CADTH’s decision. - if you live outside of canada, please dm me and i will give you a contact to send your letter to. i will find any information you need and would be happy to answer any questions you have. you doing this small thing truly means the WORLD to me. - please share this post so we get as many letters as possible, and thank you for reading this!!!

This week Dr.Phil had an episode and he said the following statement “100 out of 100 relationships that involve caregiving fail”. How about some information about my man and I for you :) We’ve been together for nearly 8 years, Married for nearly 6 months and Living together for nearly 5 years. It’s safe to say a big fuck you to @drphil because it’s quite clear on social media today that there are a hell of a lot of interabled relationships in this world that are working out quite fine. #100outof100 #sma #spinalmuscularatrophy #spinalmuscularatrophyawarness #livingmybestlife #holla #loveislove #wheelchair #blessed #interabledcouple #interabledwedding #love #wheelchairuser #happyinlove #husband #wife #married #thankyounext #disabledlove #stopthestigma #disabledandinlove

To receive a treatment that guaranteed slowing down or stopping the degeneration of my neuromuscular disease was a dream. This is what millions of dollars in research and development went into. This is what all those who are affected by SMA, be it individual, family, or friend, has yearned for in the moments where the disease is the hardest. It took me what seemed to be an eternity, but here I am, all the stronger for it. This injection is for my mom that taught me to be brave, my family that has always accepted me unconditionally, my friends that are the best cheerleaders in the world, my supporters who guided me every step of the way, my angels in heaven who have passed away from the effects of their disability, and for all those who I have yet to touch their lives. There is hope. Have faith. Go with love. Always, your friend May. (Part (2/2) #curesma #sma #spinalmuscularatrophy #neurology #interventionalradiology #smatype2 #spinraza #getswole #swoleaf #swoleoclock #disability #disabilityawareness #differentlyabled #sittingpretty #wheelchairgirl #wheelchairlife #wheelchairbarbie

in the past week: I laughed, I loved, I lost, I grieved, and I felt as though life was moving a million miles per hour. so, don't mind me over here trying to pump the brakes to make sense of it all. • I’m a firm believer that there’s purpose behind whatever it is I'm facing. but sometimes that purpose can be clouded by the crosses I'm bearing. sometimes, when I'm really in the thick of something, that purpose can often be masked by pain. • but there’s beauty in pain, I’ve learned. this place of confusion and defeat—this place where my pain seems to call shotgun in my life—I’ve been here plenty of times to know that no matter the capacity of what I’m facing, my pain will someday serve as a reason for this season. • this sunday night reminder is something I’m also going to tell myself. after all, let’s not forget the pain we’ve experienced in the past to know that we’re capable of wrestling our way through the mess we’re in today. there is purpose in this. and it’s going to be more beautiful than you could imagine. just remember to give yourself a little time and grace to discover it.

I’ve been giving this a lot of thought and I finally have a minute to put it out there. “It won’t work, 100 out of 100 times this won’t work.” - Dr. Phil I want to make something very clear. If my relationship with Alex fails it will be because I’ve spent too much time arguing with him about laundry or he’s gotten sick of me having impossibly high standards for how clean a house should be. It will be because of a myriad of reasons that cause an astronomically high divorce rate in perfectly able bodied couples. Disabled partners in relations are not merely a burden or a paycheck. That is not to say my relationship is perfect...is yours? Relationships and marriages always take work and are always a give and take. Dr. Phil’s words aren’t just hurtful, they’re damaging. They’re telling the able bodied population that those with disabilities aren’t worth it. For Alex and I, the thought of having a third person come into our home to help me, or tag along on vacations so Alex doesn’t “have” to be my caregiver, is extremely off putting. Not to mention, finding and funding personal care -particularly in a rural area - is nearly impossible. If Dr. Phil really wanted to help that couple he would have spent that screen time advocating for more personal care hours for people who need it. He would have brainstormed options and pushed for lawmakers to create policies that allow those of us who require care to get it without having to quit our jobs. Instead, he told a couple who had made it clear they had no other option that their relationship was doomed, because he thought it would make for good tv. Dr. Phil can take his #100OutOf100 and stick it where the sun - unlike his head - doesn’t shine.

Throwback #spinalmuscularatrophy #spinraza #spinrazaforall #throwback

“After climbing a great hill, one only finds that there are many more hills to climb” #reeveconnect #Spinal #spinalcordinjury #spinalmuscularatrophy #paraplegic #quadriplegic #cerebralpalsy #iamadaptive #disbabilitylife #abilitynotdisability #disabilityawareness #paralympics #theblackmancan

Recently, I discovered @shaneburcaw and @hannahayl 's channel, Squirmy and Grubs through @specialbooksbyspecialkids Shane and Hannah's channel has taught me a lot about what true love is and to not judge others from the outside, because love is found within the attitudes and actions a person poses for their significant another. Afterall, caregiving goes both ways even though the care will differ on both sides. According to Dr Phil, “100 out of 100 relationships that involve caregiving fail.” However, this statement couldn't be any further from the truth as I've learned through Shane and Hannah's channel and through #100outof100. I made this video to try and spread a positive message about love, and that it truly has no boundaries. Of course not every interabled relationship will succeed, but Dr. Phil was wrong in saying that each and every one of them will fail. Spread love not hate. I hope you enjoy . Full HD video is on my YouTube also (Link in my bio if interested) - #squirmyandgrubs #wheelchairlife #disability #disabilityawareness #accessibility #spinalmuscularatrophy #interabledcouple #ableismawareness #ableism #quadriplegic #wheelchair #sma #spinalcordinjury #paraplegic

before you begin to write off this dark place you’re in... before you begin to feel as though you’re trekking through the mud, remember: in order for a flower to grow into something beautiful, it must first be planted in dirt. hang tight for a little while longer. your sunshine is coming. #sharetheeverygirl