Is my advocacy for NMOSD self-serving or selfless?

Giving back to community is important — but so are ethics and accountability

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by Jennifer van Amerom |

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Serving our community should matter to all individuals. I’ve always believed that if each person were to dedicate time to a charitable cause, our society could bring about profound change. Just imagine the kind of world we could create together.

Even though I came of age in a household with modest means, I was instilled with the belief that giving back to my community was far more rewarding than receiving from it. As an adult, I now understand that time is a precious commodity, particularly as someone with neuromyelitis optica spectrum disorder (NMOSD), which severely limits my energy. Nonetheless, the importance of contributing to my community remains unwavering.

In my early 20s, my life took an unexpected turn when I experienced my first transverse myelitis attack, which gave me a personal cause to champion. When my diagnosis of NMOSD was confirmed several months later, I embarked on a mission to gain a deep understanding of this condition. As I met other patients, my commitment to advocate for NMOSD transcended my own personal journey.

Yet a lingering question has always persisted: Is supporting a charity that aims to find a cure for my specific ailment a self-serving act? In simpler terms, would I be as passionate about this cause if I hadn’t been personally affected by NMOSD?

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Aligning myself with the right charity

In the realm of charitable organizations, there’s an extensive array of choices. Here in Canada, for example, there are over 86,000 registered charities, while the United States boasts more than 1.5 million nonprofit entities. With so many charities to choose from, it stands to reason that I should pick one that I can speak about passionately from experience.

What also helps me choose a charity to support is how it spends its money. While some charities proudly declare that 100% of their donations are devoted to research and other core activities, others allocate a portion of their funding to cover administrative costs and fundraising efforts. In 2022, the Better Business Bureau in the U.S. recommended that no more than 35% of donations be used for fundraising and administrative purposes.

Invisible Disabilities Week

This week, Invisible Disabilities Week, is a particularly significant time for raising awareness of NMOSD and other disabilities. In Canada, the voice of advocacy for this cause is exemplified by a remarkable individual, Lauren Pires, who also happens to be this year’s recipient of the prestigious “But You LOOK Good” Inspiration Award.

As someone living with NMOSD, I’ve often grappled with conveying the daily struggles of this condition, particularly when many of my friends and family might not fully comprehend its impact. It’s in this context that organizations such as the Invisible Disabilities Association become increasingly significant as a platform to connect with others, share similar experiences, and promote greater awareness.

As I reflect during Invisible Disabilities Week, I’m inspired by Pires’ level of commitment, which is in no way minimized just because she also happens to be a patient with an invisible disability.

Championing my cause

Within my close-knit circle of friends and family, I’m surrounded by those who, like me, value giving over receiving. This shared ethos provides me with a strong foundation of support. I have moments, however, when I find myself pondering whether my loved ones ever tire of my persistent advocacy, especially as I continually seek their financial support or their precious time.

Undoubtedly, I’ve been uncomfortable making these requests year after year. Yet I realize that my loved ones’ unwavering support stems from a genuine desire to see the best for me. As long as these actions contribute to my well being, I’m confident they’ll continue to stand beside me.

Nonetheless, it’s crucial to maintain a delicate balance in my ongoing advocacy. There exists a fine line between being admirably dedicated to a cause and being an annoyance.

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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