Spinal Muscular Atrophy Bhutan

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"

Higher SMA Rate in Japan Linked to Awareness of New Therapies:... The rate of SMA diagnoses could increase as newly available treatments raise disease awareness among clinicians, a Japanese study suggests.

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 ❤