I Was Honored to Receive an Award for My Rare Disease Advocacy
I recently attended the South Africa’s Women Givers Awards. I had been invited to the awards ceremony as a nominee for my work with the Rare Bear Project. Bontlebame, a nonprofit focused on empowering women from all walks of life, organizes the awards that honor women who give back, uplift, and change lives in South Africa.
Through my diagnosis with myasthenia gravis, I appreciate the importance of giving back, being kind, and helping others. My nomination was for my advocacy work with the Rare Bear Project, a Rare Diseases South Africa program, and for my efforts to spread awareness and provide support for others with rare diseases through my blog.
I felt overwhelmed in the presence of my amazing fellow nominees: Kelly du Plessis (Rare Diseases South Africa); Vanessa Govender (Cornerstone Woman); Buyisiwe Khoza (Inqaba Yokulinda); Matshediso Mokoape (Menzi Children’s Home); Wendy Mabandla (Angels With Wings Organisation); Sedumedi Refilwe (Sedumedi Hope Foundation); Indrani Govender (Dynamic Women); Mathabo Kunene (Kunene Foundation); Margaret Hirsch (Margaret Hirsch Foundation); and Bonang Matheba (Bonang Matheba Bursary Fund).
I have come to realize that life is not about being alone but about making a difference in any way we can. We may not see ourselves as the change, but if all of us take one small action to make the world a better place, then everyone will benefit.
I have adopted a quote used in the film “Wonder” as my life’s motto: “When given the choice between being right or being kind, choose kind.” Wayne Dyer
At the awards ceremony, I heard about the difference that my fellow nominees are making in the world, and their impact made me even more passionate about and committed to my work. I may not be in a position to donate money, but I can give my time to those who need it. I may be unable to save everyone, but I can make a difference in the life of at least one other person. And I can help people to feel less alone, especially those within the rare disease community.
When I received my diagnosis, I felt that no one understood what I was going through. It seemed as if I was lost in a maze while my friends were on a smooth path on the outside. And then I found my tribe — my fellow #RareWarriors who encouraged me and lifted me — who made my life so much brighter.
I am proud that I won this award. The win came as a surprise to me, and I hadn’t even prepared a speech. I had to think on my feet to ensure I didn’t leave anyone out when thanking everyone who made it possible. This award is not just for me, but for everyone who chooses to be kind, is fighting a battle, and refuses to give up. I am proud of you.
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