We have all seen the impact our collective voice especially with the changes at the FDA this past spring. You can also be an important voice and advocate for legislation in Washington. Many bills directly impact care for HD patients and families.
The NC Advocacy Team is hard at work this month especially, trying to catch the ear of our representatives and senators while they are home for summer recess.
How can you help? Send letters/emails, make calls, show up at local events/townhalls or perhaps even attend a meeting as a valued constituent and advocate in someone’s office.
NC has FOURTEEN districts (map with districts – see below) that we are trying to match with an HD family/patient that lives in that district. That’s A LOT of ground to cover. Do you know what district you are in? Check out this link.
Here are the various bills we are asking them to support this session. You don’t have to be an expert. But maybe pick one that resonates with your personal circumstances. They are much more impacted by your personal story. Be brave.
The team has confident coverage in many districts. We are looking for folks in our HD Community to help us reach out to these districts: Rep Rouzer District 7 Wilmington to Fayetteville. Rep Harris District 8 - Rockingham area; Rep Tim Moore District 14 Gastonia and Morganton area. Rep Adams District 12 Charlotte area. These representatives Davis (1), Ross (2) and Rouzer (7) are on the Rare Disease Caucus and are especially important.
Next Steps:
- Reach out to a member of the NC Advocacy team. Ask questions. Volunteer to help.
- Reach out to congressional offices with voice mail messages in the local office or use the Congressional switchboard (202-224-3121).
- Send a letter (snail mail is so effective) to your local representative and our Senators. Advocate for their support of the bills mentioned above (or one that is particularly meaningful for you). Be sincere.
Thank you for sharing your stories!
NC Advocacy Team:
Shirley Hughes - shirlrn1@gmail.com
Marty Larson - mlarson102@gmail.com
Angela Sharpe - angela.j.sharpe@gmail.com
