2023 Brings New Opportunities to the NMO Community

How to advocate and raise awareness of neuromyelitis optica this year

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by Candice Galvan |

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Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year.

Feb. 28 (or Feb. 29 during leap years) is designated as Rare Disease Day worldwide. The National Organization for Rare Disorders is the official U.S. partner for the event. The goal is to raise awareness of rare diseases and advocate for health equity for people living with rare diseases.

Rare Disease Week will take place Feb. 28 to March 2 on Capitol Hill in Washington, D.C. The event is hosted by Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. During this time, patients and advocates come together to speak with members of Congress and advocate for changes to healthcare policy.

If you are in the D.C. area, this is a great opportunity to meet other NMO patients and their caregivers and loved ones. Registration is free, and the deadline is Feb. 17.

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March is NMO Awareness Month. Last year, 40 U.S. states officially proclaimed it as such. Efforts are currently underway to get all U.S. states to declare March as NMO Awareness Month, and we hope it will one day be recognized federally.

On April 22, The Sumaira Foundation will host its 6th Annual Gala at the Newbury Hotel in Boston. In 2022, 375 guests attended the gala, including my daughter Bella and me, and the event raised $220,000 for research. It was incredible to connect with our NMO family in person. This year, The Sumaira Foundation has set a fundraising goal of $375,000.

As I reflect on my journey as a caregiver since Bella was diagnosed with NMO in 2017, my heart overflows with gratitude.

I am grateful for all the NMO/MOGAD warriors who have paved the way for our community, enabling us to come together to illuminate the darkness of this rare disease. I’m also grateful to have the opportunity to provide support, reassurance, and positivity to those who feel alone or misunderstood on their journey, have just been diagnosed, or are caring for a loved one with NMO.

Wishing you all a year full of health, growth, opportunity, positivity, love, and light.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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