SMA UK support and empower those affected by Spinal Muscular Atrophy. We advocate for better services and raise public awareness in partnership with the health, social care and research communities.
Up to one minute ago I was unaware of SMA. I doubt Christopher Reeve heard the diagnosis either. Jerry Lewis was always raising money for kids with muscular dystrophy. But look at you. Alive and bright enough to interview your mom on RU-vid. My heart goes out to you and your mom & thank you. Today is Sunday 2024/8/4 and I wish you a long, happy, productive life. God has a plan for U
Nice to hear the differences between the 3 of you all with sma type 3 I also have sma type 3 I am 49 year old and I feel lucky to be able to walk until I was 27.
I don’t feel she is a good representative of the SMA community. Her early content on body positivity was strong, but lately there are too many concerns surrounding her platform. There is honest criticism to level that is instead getting lumped in with trolling and it’s really disappointing.
Oh god 😂 y’all are commenting here too!? You guys can’t leave her alone huh ? This women is literally living Living her life and y’all are obsessed with her every move. Embarrassing
This is a Great podcast that Reddit group is absolutely disgusting just a few days ago they made a whole thread about her starting an herb garden and how she’s not worthy to be able to do that. Apparently she’s not allowed to have a hobbies they constantly talk about her appearance , and they hide behind there, fake accounts and “concern for ari” literally they do not care about the baby. They just care about hating. They hate their lives so much that they wish they could be Alex so they make fun of her every move. Worst part is they are all women! She can post a picture of the sky and they will say she wants attention. 😅. Thank you for doing this podcast. Alex is a beautiful person & loving mother. Can’t wait too see what else she does. ❤
It’s really easy to pigeonhole one little element of criticism. But what’s been a lot harder to do is watch her channel shift from body positivity in disability to this current display of irresponsibility and questionable activity. There’s a pattern here and it’s worrying. I wish she would stop, take a breath, and reset. She could use her platform for positivity but she doesn’t. When there can be NO CRITIQUE of any kind without being labeled a troll, there’s a big issue.
This has been very insightful, I totally agree about the postcode lottery system. It seems to be prevalent across most health and social care services, unfortunately. I
Thankyou for your podcasts, I really enjoyed watching you guys. I’m trying to learn as much as I can about SMA as my 2 year old daughter has recently been diagnosed. She can walk at the moment but falls often.
A lively and interesting podcast from 3 wonderful young people. Thank you. My little granddaughter has SMA type 1 and received Zolgensma treatment a few days before Christmas ‘21. She’s now 16 months old & is so beautiful and has a beautiful personality.
To Grace and Sonny, welcome to the UK SMA Family. Sonny is a lovely, bright young man and will achieve great things with that awesome attitude to life. From the very proud Mum of Luis xx
As I’ve previously worked in an Event manager role - discussion around toilets happens a lot… accessible toilets, not so much. It’s something that IS changing but only through EM’s who have 1st or 2nd hand lived experiences of disability
Here at SMA UK, we want to raise awareness of a PA’s role and how it differs from a carer in the traditional sense. It’s a challenging but rewarding role that can also be exciting and adventurous! Join us by sharing your stories and photos of experiences with your PAs, as Christina has done, to help change people’s perceptions. You can use the hashtag, tag us on social media, or email: connections@smauk.org.uk Together, let’s remind the world that: #ItsNotJustCare
