To Make the Best Better: Advocacy & Community Service is Not a Choice, it's a Responsibility

Angela Robb is being honored as a Champion of Change in the Fight Against Parkinson's Disease.

At the age of eight, I started my community service career. Hard to imagine that an eight-year-old would make such a choice. That is when I was introduced to 4-H by my mother who was a volunteer adult 4-H leader. The motto for 4-H is "To Make the Best Better.” For the next 10 years, I participated in all levels of community service through this youth organization. My passion for service was further enhanced by great leaders including local, state, and national adult 4-H volunteers and extension agents.

During college, I volunteered at Potomac State College and West Virginia University (WVU) as a member of Circle K and Alpha Phi Omega service fraternity at WVU. My passion for community service is part of the reason I pursued a degree in political science with an emphasis on public policy and administration from West Virginia University.

My most important role as an advocate and volunteer has been in service to the Parkinson's disease community for the last 19 years. When Parkinson’s disease (PD) entered my life, unlike most people, it was not a shock. I've never known my husband, Karl, without young onset Parkinson's disease. He was diagnosed five years before I met him, at the age of 23. We have been married for 19 years. I love my husband, but I do not love Parkinson's. We acknowledge PD is part of our life, but not the entirety of our life. I'm a carepartner. My husband and I decided, in the beginning of our relationship, that we are partners in this journey living with Parkinson's.

Advocacy and community service is something I do every day. Whether I am posting PD resources online, emailing articles to support group members, speaking with caregivers over the phone, handing out materials promoting advocacy through the Parkinson's Action Network (PAN) at a an event, or helping a friend in need - I consider these actions as my way to make things better for my community. Helping and serving are a part of my daily life.

When I am asked to speak to the community, I'm adamant about the importance of each caregiver/carepartner sharing and communicating their own personal story. Each caregiver has a unique circumstance we all need to be aware of. Not only does this help those of us in the community understand their needs but it also empowers the caregiver to know they are not alone. Being heard is vitally important. Many times caregivers feel isolated and that no one knows what they are going through.

When I participate as a PAN advocate and share my personal story, I'm always quick to add that I'm also representing all those caregivers who are not with me today or have not had an opportunity to share their story. I cannot relay all the stories, but I truly feel that when I am speaking to legislators, medical professionals and scientists, they need to know there are so many unheard voices in the community.

It is my goal to continue my volunteer work for the Parkinson's community. To make the best better for all the people I meet. To honor my husband and all those living with chronic illnesses. I'm deeply humbled and honored to be selected as a Champion of Change.

Angela Robb is a Parkinson's disease carepartner and advocate living in Fairfax, Virginia. Professionally, she is president of TrueTip LLC and creative director for RobbWorks LLC.