My Risdiplam / Evrysdi Journey Day 06

It's just under a week into my RISDIPLAM Journey so I thought I would share an update and some signs of progress.
Accessibility - Ross is in his Dining Room in front of a grey blind wearing blue jumper and blue cap 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​
If you like my videos click that 👍🏻
If you’d like to know more about my experience or Risdiplam please comment in the box
If you have general comments please comment too
I’m happy to do other vlogs on SMA too
Please subscribe 🔔 for updates. www.youtube.co... Your support is appreciated.
Let’s connect
Instagram - my Risdiplam Journey / risdiplam_r...​
Instagram - my smart accessible home / accessible_...​
Instagram - my daily life of food, football and fashion / accessible_...​
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]

Ross, you’re an absolute inspiration in the effort you’re putting into being given the opportunity of having Risdiplam. 👍 Look forward to more progress updates.

[@thesmartchap]

Thanks Jane x