Thankful for the 99.9%: Advocacy, Gratitude, and Moving Forward without one (1) who won’t support my journey through grief and loss.
Thankful to the 99.9% who are a family in advocacy. One person, sadly is not and seems never will be for me. But that is ok.
Thank you to the 99.9% of people around the world who have shown care, love, support, and encouragement throughout my advocacy journey. Everything I do is in memory of my mother, Sharon, who lost her battle with Parkinson’s Disease on January 1, 2020. Many people step away from advocacy after losing a loved one, but I never wanted her story to be forgotten. More importantly, I never want other families to experience what she did or what our family continues to live with through loss and grief.
Over the years, I have been fortunate to receive incredible support from advocates, organizations, caregivers, families, and people living with Parkinson’s across the world. This community has been welcoming, inspiring, and united by a common goal: finding a cure.
Yet I have learned that not everyone will walk the same path. Recently, after years of feeling uncomfortable around one individual, I finally had the opportunity to sit down, listen, and try to move forward together. I genuinely hoped we could put the past behind us in the spirit of advocacy. I listened, I tried to understand, and I extended an open hand. Unfortunately, those efforts were not returned.
While that was disappointing, it also taught me an important lesson: not everyone has to advocate together. We may take different roads, but hopefully they still lead to the same destination—a cure.
What matters most is that we continue moving forward. No one should ever feel alone, unwelcome, or pushed aside because of their journey, beliefs, experiences, or approach to advocacy. Every voice matters. Every story matters.
For years I questioned why I felt discouraged around this situation. Today, I no longer will. I am proud that I listened, tried to learn, and made every effort to move forward with respect and understanding. That is all any of us can do. Imagine making someone else feel bad for advocating. So disappointing, saddening, unheard of and unexpected. Many do not truly see the behind the scenes, only what is on social media, public portrayal which is not entirely always reality or truth.
I could stop advocating tomorrow, but I won’t. My mother may not have wanted me spending countless hours traveling, speaking, writing, and fighting for awareness—she always wanted me focused on family—but she also taught me never to give up on what I believe in.
Raising awareness can change lives. Reaching just one person who was previously unaware can create a ripple effect that impacts families around the world.
So I move forward grateful for the overwhelming support of the Parkinson’s community and everyone who continues to stand together in this fight. I will always keep an open heart, welcome new voices, and support those who choose to share their journeys.
Never let anyone make you question your purpose. Never let anyone diminish your experiences. Your story is yours alone, and no one can take that away.
We fight on. Always.
