Patient Voices Blog

I have advocated on behalf of healthcare and caregiving issues, community corrections and racial injustice. My daughter now has 6 years sobriety and is enrolled in college to become a social worker, just like her mom! I’m so proud of her. My son still struggles with his disease at times, but knows how to advocate on his own behalf. I have since had my own medical struggles and have been caregiver for my parents and disabled brother. It seems I have found my calling in life. I’m so glad I made it through some very tough times and my kids were learning along the way. My goal is to help others find their voice. Advocacy work has been the mechanism to accomplish so much. We need to motivate others. I hope sharing my story will provide encouragement to others.

I love working with NPAF. The biggest reason is simply that it doesn't represent just one disease state. When I meet with legislators and advocate for multiple sclerosis or Alzheimer’s (for my grandparents), it’s just one thing. Legislators will get tens if not hundreds of requests every month for funding with different disease states. With NPAF, a lot of the policies that we are trying to change are going to impact everyone. Working on these initiatives allows me see and think beyond myself and try to help the greatest number of people that I can.

I have found that with most aspects of my advocacy efforts, human connection is paramount in establishing trust with everyone from patient communities to legislators. Virtual platforms have created somewhat of a barrier for advocacy projects in that regard. The fact that despite our distance, I STILL can literally FEEL human connection and compassion from everyone at NPAF makes me know, without a doubt, I’m aligned with some very special folks. Finding your tribe is always something to be proud of!

As any young adult or teen knows, our lives are constantly changing. When creating your care plan, think about where you might be a year or two from now, and health concerns associated with those changes.

From what I witnessed this past year as part of my volunteer service, it seemed so much of the anguish suffered by the patients and families could have been eased by good care planning. So what are you waiting for? Make a commitment today to be a hero to yourself, to your loved ones and to your healthcare community. Let me offer some observations I’ve made that might help ease you into the process and help you along the way.

I have been trying to remind others in my community that they are not alone—providing them resources and addressing issues that may affect their health. In the beginning, my motivation was honestly just my passion for helping my community. I also drew motivation from my own experience being a patient and wanting to share my knowledge as much as possible with others so they know they aren't alone and there is help!