NC Advocacy: Use Your Voice for HD Families
Your Voice Can Make a Difference
We’ve seen firsthand the power of our collective voice. When the Huntington’s disease (HD) community speaks up, decision-makers listen.
Advocacy is an important way you can help create change for HD families—not only at the federal level, but right here in North Carolina. Legislation and policy decisions can directly impact access to healthcare, research, disability services, caregiver support, and resources for people affected by HD.
You don’t have to be an expert to be an advocate. You just have to be willing to use your voice.
Get Involved in Advocacy
There are many ways to make your voice heard:
- Send an email or letter to your representatives.
- Make a phone call to a congressional office.
- Attend a town hall or local event where your representatives are present.
- Request a meeting with a representative or staff member.
- Share your personal story and explain how HD has affected you or your family.
- Stay informed about legislation that could impact the HD community.
Your personal experience matters. Elected officials hear from many people about policies and legislation, but hearing directly from a constituent living with HD—or caring for someone with HD—can make an issue personal and memorable.
Know Your District
North Carolina is divided into 14 congressional districts, and every HD family has an opportunity to make an impact by connecting with the representative who serves their community.
Do you know which congressional district you live in?
Find your congressional district
Knowing your district is the first step toward building a relationship with your elected representatives and making sure the HD community has a voice in every corner of North Carolina.
Why Local Advocacy Matters
Our NC Advocacy Team works to connect HD families and advocates with representatives across the state. We want every congressional district to have an HD voice.
There are communities throughout North Carolina that still need advocates willing to share their experiences and connect with their elected officials.
You can help by:
Becoming a district advocate
Help connect the HD community with your local representative.
Sharing your story
Tell legislators why HD research, healthcare access, caregiver support, and other issues matter to you.
Building relationships
Introduce yourself to your elected officials and their staff. You don't need to wait until a major vote or legislative session to make a connection.
Be Brave. Share Your Story.
One of the most powerful things you can do as an advocate is tell your story.
You don't need to know every detail of a bill or understand every part of the legislative process. Start with what you know best: your own experience with HD.
Explain what your family needs. Share the challenges you've faced. Talk about what would make a difference.
Your story can help lawmakers understand the real-world impact of the decisions they make.
How to Contact Your Representatives
Once you know your district, reach out to your representative's office and introduce yourself as a constituent.
You can:
- Leave a voicemail with the local office.
- Call the Congressional Switchboard at 202-224-3121 and ask to be connected with your representative.
- Send a handwritten letter.
- Send an email.
- Attend a town hall or community event.
- Request a meeting with a staff member.
Don't underestimate the power of a handwritten letter or personal phone call.
Be respectful, be sincere, and be specific about why the issue matters to you.
Join the NC Advocacy Team
You don't have to do this alone.
The HD Reach NC Advocacy Team can help answer questions, provide resources, and connect you with opportunities to become involved in advocacy.
Interested in helping? Have questions about getting started? Reach out to the NC Advocacy Team.
NC Advocacy Team
Shirley Hughes
shirlrn1@gmail.com
Marty Larson
mlarson102@gmail.com
Angela Sharpe
angela.j.sharpe@gmail.com
Every Voice Matters
Advocacy doesn't have to be complicated. It can start with one phone call, one letter, one conversation, or one person sharing their story.
Together, we can make sure the voices of people and families affected by Huntington's disease are heard.
