I recently participated in a state legislative day and left feeling great about what we accomplished. How do I maintain this energy and continue to advocate for the issues I am concerned about?
Congratulations on participating in your state legislative day. This is an important way to advocate for the bleeding disorders community. Educating your representatives through personal stories, facts, and the effects rare, chronic disorders have on all aspects of life is critical to reform and sustaining legislation.
To continue the conversation after a legislative day, contact your representative’s office shortly after your visit. The contact can include: sending a hand-written thank you note, emailing a photo and message, and posting about your visit on social media and tag your legislator. With all follow-up contact, note what you discussed and ways to stay involved.
Maintaining the energy of a legislative day can be challenging with life’s many demands. Preserving this excitement and motivation can take many forms.Â One easy way to continue advocating is to C.A.R.E:
- Contribute: Donate time and ideas to your local bleeding disorders organization. Volunteering can be direct service (e.g. cleaning your local summer camp, helping with a walk or other event, etc.) or indirect service (e.g. administrative support for a holiday appeal, representing your member organization at a fair or conference, etc.). Sharing your ideas and feedback also is a valuable way to serve. For example, the questions for Dear Addy come from community member suggestions. Anyone can contribute time and ideas regardless of age and experience!
- Advocate: Continue to advocate for the issues discussed during your legislative day. You can do this by coordinating a letter writing campaign, researching state and federal legislation, voting in local, state, and federal elections, and reaching out to other chronic, rare disease groups to collaborate on advocacy projects.
- Reach-out: Ask your member organization how you can help. Community organizations often have too much work and not enough staff. Reaching out to see what you can do saves time on outreach for volunteers. Encourage other community members to get involved as well.
- Educate: Share your advocacy experiences with friends and family. Social media and other technology enables you to connect easily with others and generate awareness about important issues. For younger advocates, consider doing a presentation or paper on bleeding disorders for school. Recently, Ben and Rhett from Arkansas did a project on hemophilia, educating their class about what it is like to live with a bleeding disorder.
You may want to follow HFA, as well as your member organization, on Facebook, Instagram, YouTube, and Twitter. Social media is a great resource to stay informed about legislative and community priorities and encourage advocacy year-round!
Have a question? ClickÂ HERE. Your name will be changed in the response.
HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.