Ask The Advocates: How Are You Practicing Advocacy During CF Awareness Month?
It's Cystic Fibrosis Awareness Month! All month long we are talking about how to spread awareness and practice advocacy for CF.
How do I engage in CF advocacy?
The really cool thing about advocacy is that it is what you make it. Some people are interested in policy work. They may prefer to participate in local CFF chapters or CF-related groups, or perhaps advocate with legislators on the state or national level. Some people advocate by volunteering at non-profits or participating in clinical trials. Others like to advocate from their home, maybe through social media, a blog, or another virtual outlet.
I do a Livestream every night on Twitch.tv and advocate during that time. While I stream playing video games, I am doing my treatment, taking medicines, and answering questions about CF. Also, we donate part of our proceeds to the CFF. It is a lot of fun and makes the last treatment of the day more tolerable!
Volunteering and writing
Response from Marieliz Landa
I volunteer for the CF Foundation in various capacities and I write blogs about my experiences with CF. Telling my stories and reaching out to other CFers online has been one of the most rewarding things I have ever done. I love feeling like I am making a difference in someone’s life.
Sharing, speaking, and organizing
Response from Cheriz K
In May, I post more educational and personal information about CF on my social media platforms, but I usually carry the awareness throughout the year. I started a personal blog in 2012, so I have been blogging and posting on social media to raise awareness for almost 10 years now.
Additionally, I usually speak at a handful of events around the state each year. I have 3 talks in May-July 2020 (via zoom, of course). I usually try to share as much about my life as possible to help spread awareness and support for those with CF.
This year, I have been doing more committee work, especially this month. There are lots of ways to help, signing up for advocacy CF alerts, joining local or national CF committees, fundraising, and sharing information.
How are you practicing advocacy for CF?
These are just a few ways that you can engage in advocacy efforts for CF. As an example, one of our other advocates, Megan Barlow, organized the 65 Roses Virtual Run.
And keep in mind: advocacy isn't just for the month of May! Many people practice advocacy all year round, or for special events like Rare Disease Day.
We want to hear what you are up to! Share about your favorite ways to be a CF advocate in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?