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“There was a point in my life where I looked at the fifth of April, 2003, as a tragic day, a day that my life was forever changed, a time when I looked at myself and said, ‘I’m never going to be able to do anything in life.’”
These days, he takes a far different approach to that event, to the point where he has the date and time of his injury tattooed on his arm. “I look at the fifth of April, 2003, as a blessing. This was a day that part of me died, but part of me was reborn.”
It wasn’t always easy—and still isn’t. “I still have to practice positivity daily. I still have moments where I question whether I’m making a difference. Do I reach anybody? Does it mean anything?”
He recounted how a man recently stopped him in the grocery store. He looked down to see the man’s entire leg bandaged. The man told Martinez how much he had inspired him. “I saw you laughing and joking and having a good time. I thought, ‘Maybe I can do that too.’”
He now travels the world as a motivational speaker. Martinez has gone on to compete—and win—Dancing with the Stars, star on the soap opera All My Children, and write a New York Times bestselling autobiography.
“I’m at a point in my life now where I look at adversity or challenges, I lean into it. When change is presented, I don’t shy away from it.”
Before Martinez spoke, Leonard Valentino, MD, CEO and president of the National Hemophilia Foundation, brought a different kind of inspiration. He identified a number of accomplishments in recent years. He addressed the “subject matter experts” in the room. “You want to see yourself better represented in this organization. That’s why NHF has expanded its mission.”
Valentino also announced a rebranding of NHF, to launch at BDC 2023. “The goal of the rebrand matches our mission: to better reflect all community members and experiences,” he said.
He called for greater emphasis on ensuring equity and access to care. “NHF wants to be a better partner to you—the subject matter expert—to reduce disease and care burdens, address your unmet need, and improve health equity.”
He also pointed attendees to several sessions on gene therapy, “a real, impactful and potentially life-changing decision for a subject matter expert and their family. As gene therapy soon becomes a reality for this community, know that NHF is using advocacy tools to ensure that gene therapy is safe and effective.”
Dawn Rotellini, NHF chief operating officer, paid an emotional tribute to former NHF CEO Val D. Bias, who passed away in December 2021. Bias had led the organization for 11 years. ■