My Risdiplam / Evrysdi Journey Day 02

Check out my latest video which documents my first 48 hours on RISDIPLAM. I’m still learning how to make videos and don’t really have great software so I’m doing this mainly from my phone. Today I talk about side-effects, any noticeable gains and how I’m generally feeling. Thanks for watching and thanks for the amazing people at Roche and all those at treatsma, cure sma and smauk who fought to give me this amazing juice
Accessibility - Ross is in his Dining Room in front of a grey blind wearing blue jumper and in his wheelchair.
Risdiplam (Evrysdi) is an approved treatment for spinal muscular atrophy (SMA) in adults and children 2 months of age and older.
Risdiplam (Evrysdi) is a survival motor neuron-2 (SMN2) mRNA splicing modifier. A liquid medicine, it is administered daily by mouth or feeding tube and is the first and only medicine for SMA that can be taken at home. It works to increase and sustain functional survival motor neuron (SMN) protein levels in the central nervous system and peripheral tissues. SMN protein is found throughout the body and is critical for maintaining healthy motor neurons, responsible for transmitting movement signals from the brain to the muscles. People affected by SMA are dependent on the SMN2 gene to produce SMN protein, as they carry a mutation in chromosome 5q resulting in the SMN1 gene producing insufficient levels of functional SMN protein. Evidence shows that increasing the levels of SMN protein has significant clinical benefits for people living with a wide range of SMA types.
You can find more about SMA here
NHS
www.nhs.uk/con...
UK Charity
smauk.org.uk​
Treatment Charity UK
www.treatsma.uk​
Cure SMA (USA)
www.curesma.org​
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Recommended SMA gurus
Shane Burcaw www.youtube.co...
Allie Williams / alliewilliams​
LeMondre Pough / blupress...​ video discuss my experience of Risdiplam (Evrysdi) as I approach two weeks of doses.
#evrysdi​ #risdiplam​ #roche​ #smatype2​

[@janealthorpe3436]

Sounds like a really positive start Ross, we look forward to hearing more from you in a few days. Jane & Mark x

[@thesmartchap]

Thank you Jane X and Mark XX

[@lisag954]

So interesting to hear your experiences and updates. I will be starting my Risdiplam soon.

[@thesmartchap]

Thanks Lisa. The more recent videos have some interesting developments. Thanks for watching and subscribing. Good luck with your journey to and I look forward to seeing how the drug helps you. I watched your video drinking a cup of tea so you could be benchpressing in no time 🤪

[@lisag954]

@@thesmartchap Oh yes! Lol. I've decided I'm going to call it my magic potion from now on lol.

[@leahsf7708]

Not sure about music‼️

[@thesmartchap]

It’s gone from future videos :-) my skills are developing 😂

[@leahsf7708]

Did it coincide with you doing vaccine maybe that’s why you felt crap?

[@thesmartchap]

No my vaccine was 3 days after this. It generally made me feel weird for 2 days