Advocating for Huntington’s Disease Awareness and Mental Well Being

Meet Daily Point of Light Award honoree Chelsea Roberts. Read her story, and nominate an outstanding volunteer or family as a Daily Point of Light.

Chelsea Roberts is a mother, non-profit social media manager, award-winning painter and trail runner – not to mention holds the title of Mrs. Oregon International 2024. But with all of these responsibilities on her plate, there’s one cause she continues to devote her time to: finding a cure and raising awareness for Huntington’s Disease.

Chelsea’s involvement with the Huntington’s Disease Society of America (HDSA) shows a fierce dedication to health advocacy. Having personally experienced the impact of Huntington’s disease, with her mother and grandmother passing from the disease and her brother and sister carrying the genetic markers, Chelsea has been a steadfast volunteer with the HDSA for nearly a decade. She served as the vice president for the Board of Directors for the Utah Chapter and now leads the Portland Oregon Chapter as the affiliate head. For the past three years, she has chaired the Team Hope Walk in Portland, dedicating her time daily to securing sponsors, organizing entertainment, advocating for donations and raising awareness through social media.

As an Eco-Warrior and Mental Health Advocate, Chelsea’s impact extends further. She is certified in Mental Health First Aid, empowering her to support others and foster mental health awareness in her community. Drawing from her personal experiences, she actively works to empower women and promote mental well-being.

Read more about Chelsea’s relentless commitment to these causes, devoting approximately an hour of volunteer work every single day.

Tell us about your volunteer role.

I have volunteered with the Huntington’s Disease Society of America (HDSA) organization for almost 10 years now after the passing of my mother to this devastating disease. I was the vice president of the Board of Directors for the HDSA Utah Chapter prior to moving to Oregon and now am the “Portland Team Hope Walk” chair. This is my fourth year in leadership for a “Team Hope Walk” and I am so grateful for all the community support and local volunteers to make this annual fundraising event a success.

Why is this issue so important to you?

When I was 8 years old my mother was diagnosed with this horrible disease that is best described as having Alzheimer’s, ALS and Parkinson’s all at the same time. Throughout my childhood, her condition slowly deteriorated and when I was 19 she passed away from complications. To watch someone you love and admire demise to complete dependency was heartbreaking. Since the recent diagnosis of both of my siblings to this genetic disorder, my resolve to support those affected and ultimately find a cure has strengthened further.

What inspired you to get started with this initiative?

The motto for my platform as Mrs. Oregon International and the HDSA is “Family is Everything” and it basically sums up completely why I do what I do daily – for the four generations Huntington’s Disease has affected just my family alone. After my Mom’s passing I chose to test for the genetic marker. My results came back negative; I do not have the disease and cannot pass it on to my children. This news, although wonderful, left me with an immense amount of “survivor’s guilt.” I resolved to use this gift and make a true difference, let my voice be heard and advocate for awareness to find a cure.

What are your long-term plans or goals for the organization?

I have big plans to continue to build the Oregon HD community and establish an official HDSA Oregon Chapter. Thankfully this is already in the works. I also have plans to grow my social media “Let’s Talk About HD” series by partnership and look forward to advocating for this cause on an international level when I compete for the prestigious title of Mrs. International next month in Kingsport, TN.

What’s been the most rewarding part of your work?

There have been some wonderful milestones in my work but most recently my social media videos inspired a family to get tested for this disease. This test, and the news they received, helped answer so many questions. I’m grateful for the ability to advocate for awareness and support to our amazing HD warriors and their superhero caretakers.

What have you learned through your experiences as a volunteer?

I have learned that small simple acts of getting involved or “trying” to make a difference really do matter and add up to create momentum for change. Never think your sacrifice doesn’t matter.

Why is it important for others to get involved with causes they care about?

If everyone gave just five minutes a week to volunteering or giving back, imagine what this world could accomplish. Imagine all the good, all the collaborations of kindness, all the smiles of gratitude. Volunteering makes this world a better, more beautiful place.

Any advice for people who want to start volunteering?

Just get started. Find something you are passionate about and act now.

Do you want to make a difference in your community like Chelsea? Find local volunteer opportunities.