As someone who has been personally touched by hemophilia throughout my life, advocating for the bleeding disorders community at Fall Advocacy Days this year was both an emotional and empowering experience. I want to express my deepest gratitude to the Hemophilia Council of California (HCC) for their dedication and this opportunity to participate in advocacy.
This was my first time stepping into the role of an advocate, and while I felt a mix of excitement and nervousness, the support and camaraderie from the HCC made the experience unforgettable.
My Journey with Hemophilia
Hemophilia has always been part of my family story. My father had hemophilia, so I grew up familiar with the challenges and uncertainties surrounding the disorder. But nothing could prepare me for the moment I learned that my son, Graysen, now 5 years old, was also diagnosed with hemophilia shortly after his birth.
The diagnosis brought fear and trepidation. Questions raced through my mind: How would we navigate his care? Would he face the same challenges my father did? However, the HCC stepped in, providing invaluable resources, medical education, and, most importantly, a supportive community.
Fall Advocacy Days: Stepping Into Advocacy
When I heard about HCC’s Fall Advocacy Days, I knew I had to participate. This organization has given so much to my family that contributing even a small part to their mission felt like a natural decision.
The event began with an intimate training day, where we received valuable information, tips, and talking points to present to our local legislators. During the dinner and training session, we shared our personal experiences with other members of the bleeding disorders community.
Hearing their stories was both humbling and inspiring. I felt immense gratitude for the health insurance and employer benefits that cover most of Graysen’s treatments and care. However, I was reminded that many in our community are not as fortunate. For them, access to life-saving medications, educational resources, and ongoing care depends heavily on legislative funding and support.
Advocating for Our Community
One of the most impactful parts of the experience was meeting with my local California legislators. Sitting down for an intimate conversation with the people who make critical decisions about state funding was both an honor and a responsibility.
We shared stories of the challenges faced by individuals with bleeding disorders, emphasizing how vital funding is to sustain access to medications, resources, and support systems. The opportunity to speak not only for Graysen but for others in our community was empowering.
Why Advocacy Matters
Participating in Fall Advocacy Days was a reminder that even small efforts can create big changes. Advocacy isn’t just about attending meetings; it’s about sharing your story and raising awareness. For our bleeding disorders community, those few hours of advocacy translate into real dollars that provide critical support.
If you’ve ever considered becoming an advocate, I encourage you to take the leap. Whether it’s attending a training, meeting with legislators, or simply sharing your story, every contribution makes a difference. Advocacy doesn’t require expertise—just your voice and a willingness to speak for what matters.
Gratitude and Looking Ahead
I’m incredibly grateful for the HCC and the work they do for families like mine. Thanks to their support, I’ve gained the confidence to not only care for my son but to fight for a brighter future for the entire bleeding disorders community.
Advocacy starts with a single step, and I’m proud to have taken mine. Together, we can ensure that every individual with a bleeding disorder has access to the care and resources they need to thrive.
To learn more about how you can get involved, visit www.hemophiliaca.org/education or reach out to your local bleeding disorders organization.
