Cure SMA - An interview spreading awareness about Spinal Muscular Atrophy
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- เผยแพร่เมื่อ 22 ก.ย. 2024
- OKAY! Very different video today but I am very happy to post this video this week and get out of my comfort zone! I had a very good time hearing about the stories of Ever any Maryliz, I also had fun being an “interviewer” for this video. I hope if nothing else this video reaches a few people who may or may not know the struggles of people who have SMA. I am glad to use my small platform to get the word out and see if I can help at all!
Make a Donation to Cure SMA here - donate-curesma...
Please also go subscribe to Ever’s youtube channel @Spinners_TV
Lastly the main point of this video is to help put pressure on airlines around the country (and world) to step it up and make themselves more wheelchair accessible. @Delta @united @AmericanAirlines @SouthwestAir @spiritairlines and any of the other airlines in America. @Delta it sounds like you are already leading the charge on this so good for you.
@JerryRigEverything maybe you will get a kick out of this video as well, I know you are heavily involved in this effort of accessibility. So thank you for that!
Tagging some big names for maximum awareness, let Me know if you want to be removed and I will. @MrBeast @tseries @SimonWilson12 @drewbinsky @joerogan @dudeperfect
#curesma #trend #shorts #donate #austin #texas
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Thank you Troy, congratulations for this video. Great work. I'm also a SMA patient and your video it's a positive contribution for a better world.
Thank you for the comment Alexandre! I hope this video was able to do the slightest amount of good and spread the word for SMA awareness!
00:00 introduction, disclaimer, etc
06:48: Beginning interviews
I have a niece with SMA. I am fully confident that she would not be alive today but for the treatments that are currently available for SMA patients. I honestly didn't think she would have survived her first 6 months, but she's made it to a year and a half, is making incredible progress, and does all of this in good cheer. I am hugely gratified to see Mr. Suarez at age 39 as I feel this bodes well for my niece's potential for long-term survival. I very much appreciate Mr. Suarez' intelligence and how well he speaks on the issues of ADA accessibility. Good Job Mr. Suarez for providing light as the sun went down!
Also, when Maryliz talks about risking the specialized chairs that SMA patients use, those special wheel chairs are unbelievably expensive, so not something one wishes to have treated haphazardly, and possibly damaged.
Thank you for adding time stamps! And Thank you for sharing this story Vicki! I appreciate the positive comment!
Good intention; however, your presentation of the subject matter is poor and distasteful. Editing is a magical tool! You would have a much stronger video if you left out 20 minutes of you explaining how you don’t do interviews and you realizing on the spot what the foundation you’re interviewing is.
Cut the fat and get to the point! Show passion not a weird fact to get views and likes
Appreciate your comment and opinions! I am aware I have a lot of areas I can improve on! Thanks for the feedback