Part of being a good advocate is to be very clear about what you want, and have something specific to “ask” your legislator.
The problem is, there are many people asking for a lot of different things. I, personally, feel that it is most effective to join with others who have a common message. There is power in numbers.
Unity is strength…when there is teamwork and collaboration, wonderful things can be achieved. – Mattie Stepanek
Teaming up with a patient organization is a great way to start. Organizations with a commitment to advocacy usually have put a lot of effort into defining and prioritizing the problems they will tackle in a given year, researching these problems, coming up with adequate data, and assessing how they will fit in the political landscape. These organizations tend to do a lot of behind the scenes work in addition to the work they do with their advocates.
Right now, I am aware of only two national patient organizations who advocate specifically for issues related to congenital heart disease.
- The Adult Congenital Heart Association– www.achaheart.org; email: firstname.lastname@example.org for more information
- Mended Little Hearts – www.mendedlittlehearts.org; email: email@example.com
I suggest you join one or both of these advocacy teams by emailing them, today. They can let you know what their current advocacy priorities are. The Adult Congenital Heart Association will even send monthly advocacy updates and alert you to any new opportunities to take action. Mended Little Hearts can help connect you with your state advocacy team working on pulse oximtery screening legislation.
There are other advocacy organizations that are working to help with larger populations including those impacted by heart defects.
- American Heart Association – www.yourethecure.org
- March of Dimes – www.marchofdimes.com
- Newborn Coalition – www.newborncoalition.com
Again, I would suggest you learn more about their advocacy priorities and consider joining their advocacy teams. These are just a few that I have experience with. There are many others out there, as well.
Here are some issues that are important to me!
- CDC funding for CHD data collection across the lifespan
- NIH funding for multi-centered CHD research across the lifespan
- Access to appropriate and quality care across the lifespan
Your Turn: What is important to you? What are you willing to fight for?
This post is part of an introduction to advocacy series. Click here, to find the other posts in the series.