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Since its inception, The Sumaira Foundation (TSF) has continuously emphasized the positive aspects of living with a rare disease such as NMO, always underscoring that, while the disease is a serious and challenging one, it does not define you as a person and can even open up new opportunities for patients and their loved ones.
A whole month dedicated to patients and our loved ones, coming together to raise awareness of NMO – a dark and devastating condition.
Being diagnosed with NMO was one of the darkest moments of my life, as I am sure it was for many of the beautiful souls that I’ve had the pleasure of meeting who share this journey with me, but NMO Awareness Month gives us the opportunity to show the world, and each other, that there is light in our lives, that we are a strong, resilient bunch! A real community!
And during this year’s NMO Awareness Month, we proved this even more than ever before!
We kicked off the month with the launch of our first ever European NMO Awareness Month campaign – ‘Imagine My Life with NMO’ which encouraged NMO patients to submit creative expressions of all types to show how they have reimagined their lives with NMO. We had submissions from France, UK, Germany, Hungary, Denmark and many more. Here are our top picks:
Imagine My Life With NMO aims to bring our patient/caregiver community together to raise awareness of NMO across Europe and build momentum for designating March as the official month for NMO awareness in Europe, both at the country level and continent-wide.
Since 2016, March has been recognized as NMO Awareness Month in the US and elsewhere. It is TSF’s goal to establish official recognition of NMO Awareness Month around the world. For 2022, TSF aims to organize our campaign around the positive themes of creativity and expression highlighting the lived experiences of our patient/caregiver community in Europe.
Through this campaign, TSF aspires to expand its reach, platforms, communities and programs throughout Europe to support NMOSD/MOG-AD communities broadly defined, including patients, caregivers, clinicians, researchers and advocates.
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