Patient Voices Blog

I was motivated to get involved in patient advocacy because of my own experiences and the experiences of those who are close to me. My neighbor, who had been recently discharged from the hospital, passed out in our building's elevator and was rushed back to the hospital with a new head injury. There was no one available to really support her, so I did an online search for organizations that could possibly help and that's when I learned about NPAF and PAF. That incident led me to talk with my other neighbors about their experiences with healthcare, and I learned that despite all of them having “good” medical coverage, they all had trouble navigating the healthcare system. Today, talking with my neighbors keeps me engaged with my community. I have given several presentations in senior housing buildings, local organizations and community fairs about NPAF and Patient Advocate Foundation (PAF). I share flyers and pass out literature in the community and participate in events with other like-minded organizations to support legislation that will benefit all patients.

I have worn many hats over the years. I have been a health care professional as well as a family caregiver for loved ones with chronic illnesses. I make use of my experiences in my community by working with several organizations as a patient advocate, including the American Cancer Society, Memphis Breast Cancer Consortium, Caregivers Respite and Redemption Ministers. I also continue to assist with caregivers, especially focusing on self-care and end-of-life  issues. I like to use Facebook, Instagram,  Twitter, YouTube, and blogging websites to educate my family and friends about the issues I'm passionate about. I also like to use Zoom to facilitate conversations around care planning and grief. 

As the owner of Helping Hands Foundation Inc, we advocate for the medically-at-risk aging and disabled populations and their families in the Cape Fear Region. We provide necessary resources and support services to receive and deliver quality home care. Searching for resources online is what led me to NPAF's webpage. I instantly knew you all had a passion for advocacy and serving disabled communities. The resources were unlimited, and each webinar and zoom call has been very  welcoming and informative. The organization’s voice and the powerful stories fellow advocates shared, motivated me to volunteer for NPAF. Being an advocate isn't easy, and finding a foundation that shares the same interest and passion for advocacy as me was jaw-dropping.  Sharing the same interest, which is, helping others is our gift. Serving others is our passion and advocating for patients and caregivers is what we do.

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!