Spinal Muscular Atrophy Bhutan

05/08/2025

https://youtu.be/nCdnyvBXHnk

FREE 🌐 https://inclusionandyou.gumroad.com/l/Dad/bdd0002 🌐August marks Spinal Muscular Atrophy Awareness Month, designed to spotlight this genetic disease....

12/10/2022

Understanding the prevalence of the disease, is critical. It's not that it's not there, but it's about the question of being diagnosed or not.

"Rare is not Rare"

The rate of SMA diagnoses could increase as newly available treatments raise disease awareness among clinicians, a Japanese study suggests.

05/08/2022

https://fb.watch/eIR6q9udEo/

05/08/2022

Treatments for SMA 👍

Where is the affordability by a patient privately🤔.............🤯?

Treatments available📣 but Inaccessible to many🥺

Rejoice the availability💃 or sink in the pain more than ever😭?

Choices?
No choices for inaccessible families📣. The only choice, watch others improve with treatments.

Decision for access to treatments?
Where are you born🙄



Roche Biogen Novartis
Cure SMA Cure SMA India Treat SMA World Health Organization South-East Asia Region - WHO SEARO spinal muscular atrophy

01/08/2022

Today around the world is SMA Awareness Day. Even though we all share the same goal which is to raise awareness, our SMA lives are all very different.

Thousands of adults & children across the world are still not receiving the correct standards of care, and thousands are left without any treatment whilst others in other countries have the option of three to choose from.

Until we, as a global SMA community have the same care and choices, there will ALWAYS be noise to be made.

We had no choice but to fundraise for our daughters treatment and even this will only last one year. My family have great pride but our pride takes a back seat when it comes to saving Paldens life.

Palden although with her own battles is still kind, non judgemental, loving and with a good heart. She has empathy and compassion and I am immensely proud of her for this beautiful nature and pure soul.

Until every single person in the world has treatment our work is never done.

With true love, hope, honesty and gratitude.

Thank you ❤

31/07/2022

06/06/2022

We would like to thank all the donors for helping Palden access her treatment. Palden is finally on treatment. Thank you all so much.

We would also like to mention that there are those who have been equally working hard round the clock behind the scene throughout the journey to make it happen and we are truly blessed and fortunate to have you all walk us through this journey, without whom this would never have been accomplished💙. Thank you so much.

We are truly grateful that today the joy belongs to "US" all because of your love and support and kindness!
Our heartfelt Gratitude to everyone involved. Thank you so much la 🙏💙🙏