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 KZbin. 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

Good

risdaplam _ Spiranza ? what ist Good

Please sir help me babe spinal muscular 5 mans halp me

Really interesting, thank you.

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.

Such an informative episode! Thank you to everyone involved. Great to see so many familiar faces.

this podcast is great ...carry on

She literally used her baby as a cooter curtain to promote her only fans…

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.

This was recorded a couple months ago, if only it was recorded a week ago so much more shitty stuff has come out about her!

Her hate started when she was making fun of SA victims!

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. ❤

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.

Hey everyone

the kid is so cute 🥰

I’m korean spinraza Administered up to the 11th I received it

sma typ 4😢😢

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

How can I get treatment for sma india?

𝙥𝙧𝙤𝙢𝙤𝙨𝙢 👉

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

Fantastic video! Well done everyone and keep up the good work

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: [email protected] Together, let’s remind the world that: #ItsNotJustCare

Loving listening to you three experiences, I’m an SMAIII aged 59 and it’s great to hear how things have changed. So good you all went university

Very informative, especially the timescale with regard the clinics, I’ll wait to mid January then.

Splendid chaps , the pair of them , but they do have bloody appalling taste in the sports teams they support ...