It can be hard to make connections with other people who have bleeding disorders like hemophilia or von Willebrand disease since many of us live spread across California.  So how can we grow community and develop the advocacy power of the bleeding disorders community in California?  

Perhaps you, like HCC Board Member Carson Knight, live in an area where you don’t know anyone else that has a bleeding disorder like yourself.  Carson found at an early age that literally coming together at his Foundation’s summer camp “The Painted Turtle” gave him “the opportunity to meet a bunch of other people with conditions like mine.”

Carson further reflected that “just seeing other people in the community really made me get passionate about making sure that our community has everything that it needs for people to be healthy, happy, and able to live their lives to the fullest.” This desire to improve the lives of his community drove Carson to try out advocacy for the first time as a teen Future Leader with HCC.  As they say, the rest is history.

Are you also looking to develop community, or have you already found your blood family and would like to do more to speak up for them and their health access needs?  Perhaps “advocacy” sounds scary or out of reach, but you still want to do more to improve the health of your family and community?

Well, this year the Hemophilia Council of California has launched a new way to build relationships with others in the community while you make your voice heard by legislators.  Fall Advocacy Days bring advocacy to YOU instead of bringing you to the Capitol.  

A Bit of Background:  In the California legislature, each legislator represents a district or piece of California.  Legislators have their local district offices across the state in the specific region they represent.  This is where YOU can make a huge difference by visiting your legislators in their DISTRICT offices, near where YOU live, too!

Carson has this to say about his experience doing local district advocacy:

I visited a few [local legislators’ offices] in my time. I’ve always found, especially having been in both Sacramento in the Capitol and being at home in a senator or an assemblymember’s home base in their local office, it has always felt to me that it’s a warmer, a more welcoming atmosphere [in the local office].

Benefits to Advocates of Local Advocacy:

If you are new to advocacy, this more ‘welcoming atmosphere’ is a great place to start with telling your story to your representatives.  Senators and assemblymembers love to hear from the people they represent in the districts where they live!  You won’t have to travel very far to participate, either!  Often less than an hour away. And during this fall, legislators are more likely to be in the district instead of in Sacramento, so the chances of meeting them personally is much higher.  

While there will always be a need for Sacramento Capitol advocacy at Legislative Day, local district advocacy plays a vital role!  

You may be wondering– ‘How are they different?’ and ‘Can district and Capitol advocacy still work together?’ Carson Knight sums it up this way:

If you have a personal issue and you really actively need help resolving the issue, the district team is your go-to. But if you want a law to change in California, then you want to talk to the Capitol office and you want to bring your experience from the district to the Capitol office, and you want to tell them why the bill that you’re talking about is going to fix the problem that you’ve been having in your life.

HCC needs YOU to help us introduce the bleeding disorders community to lawmakers across the state -to really make a connection with your representatives- when they don’t have bills to distract them.

For Fall Advocacy Days, the goal is not any specific bill; we want to introduce you to your legislators and give you a chance to share your story with them!  This work is so important because then in March when we go to Sacramento, they will remember our community!  We hope you can be part of this!

What Kind of Commitment is Fall Advocacy Days?

Fall Advocacy Days will consist of a one-hour training – either virtually via Zoom or at a local dinner- the first night.  The second day you will have one or two half-hour meetings at your representatives’ local district offices. [We also have an Advocacy Dinner and Advocacy Webinar if you want to learn more about advocacy or perhaps can’t get time off for meetings.]

During training, you’ll hear more about telling your story, advocacy, and meeting logistics.  You will have lots of opportunities to ask questions and meet other people in your region with bleeding disorders.  

During your meetings, you’ll be paired with more experienced advocates who’ve done this before.  Perhaps you have attended a Legislative Day or Washington Days?  Then you might be a great person to guide newer advocates on their advocacy journey!  Either way, we hope you can join us!

Still undecided if you should try Fall Advocacy Days?  Here are some parting words from Carson Knight:

I would say if you are considering local advocacy [by] going to a district office or just talking to a legislator’s team, I would say do it; it’s easier than you think. I always like to tell people that whether you’re talking to a senator or an assemblymember or somebody who works for them, they’re human. They’re just as human as you are, and they love to hear from you, especially in the district office. They want to hear from their constituents. They want to know what is going on. So, if you’re considering it, I would say go for it.

It is easy to sign up!  Click here to register and afterwards we’ll contact you with the locations and times of your training and meetings. 

Questions?  Contact Andrea Palladino at andrea@bdcouncilca.org or (415) 595-4057.