What a year! In addition to introducing a new name and celebrating a 75th anniversary, the National Bleeding Disorders Foundation honors a variety of individuals and organizations who have made significant contributions to the inheritable blood and bleeding disorders community with the 2023 Awards of Excellence. These outstanding award winners – nominated by their peers – were celebrated during a ceremony on the final day of the 2023 BDC.
The honors are annual, but a new accolade will be included in 2024: the Lived Experience Excellence Award. NBDF continues to move forward, and we extend the heartiest of congratulations to the following for helping it all happen.
The John Indence Award recognizes a chapter’s exceptional work elevating advocacy issues, spreading awareness and raising funds. This year’s recipient is the epitome of those efforts. Western Pennsylvania Bleeding Disorders Foundation put its own creative spin on the Bleeding Disorders Awareness Month theme – “Start the Conversation†– and used social media, community members and resources to highlight various pertinent topics around advocacy, mental health, access to care and more. WPBDF Executive Director Kara Dornish, in accepting the award, said the group was truly honored to be recognized. She credited the passion and dedication of advocacy ambassadors, the support of the foundation advocacy team and the “incredible community†of Western Pennsylvania.
Philanthropist of the Year: Joe Alioto, Chicago, IL
Joe Alioto has been involved with the National Bleeding Disorders Foundation since the birth of his son John seven years ago. That’s when the family learned of his hemophilia diagnosis. Since then, Joe and his family have dedicated themselves to helping raise funds to find better treatments and cures. Over the last few years, they have given and raised more than $200,000, and continue to do more each year.
This award honors a person or people who have demonstrated exceptional generosity through direct financial support. Joe, we appreciate all that you and your family do.
Owen Crabbe, 10, lives with von Willebrand disease, but it doesn’t define him. He competes in soccer, cycling and swimming, all while maintaining straight As in school. This year, he can add one more noteworthy accomplishment: Crabbe is the recipient of the Ryan White Youth Award, presented to a young individual who has helped educate those within the inheritable blood and bleeding disorders community and among the general population by increasing awareness and understanding. Owen continues to be an example of why it’s important to manage a bleeding disorder to maintain an active lifestyle. As his father, Ryan Crabbe, has said: “He demonstrates to others in the community that having an inherited bleeding disorder is not a reason to stay on the sidelines.â€
Judith Baker, DrPH, MHSA, is the winner of this year’s Lifetime Achievement Award, fitting for someone who has amassed a lifetime’s worth of accomplishments. Since 1990, Dr. Baker has made a significant impact as a regional coordinator for the Western States Regional Hemophilia Network; administrator of the HRSA and CDC grants; a researcher; an advocate for the nursing, physical therapy, social work and behavioral health groups; and a friend to many in the bleeding disorders community. She retired from her regional role at the Center for Inherited Bleeding Disorders in California in December 2022, and continues to be a consultant in the bleeding disorders and rare blood disorders communities. “I thank the foundation, patients and colleagues for this tremendous honor,†she said in learning of the recognition. “This Lifetime Achievement Award shows that public health is ‘mission critical’ to help all individuals with rare and under-recognized blood disorders flourish.â€
Advocates come to the community in a variety of ways. The 2023 Advocate of the Year, Julie Fredrickson Jones, began her journey with the bleeding disorders community when she married her late husband, Chad, who had severe hemophilia A. She has volunteered with Texas Central Bleeding Disorders (TexCen) since 2010 in various roles, serving as executive director since November 2018. Jones said she was honored to receive the award, “especially given the rich history of advocates in the bleeding disorders community. Even today, I continue to learn that our voices matter. While it means so much to me to receive this award, as my good friend Ryan Crowe says, ‘Advocacy is a team sport.’ Thank you to my fellow advocates in Texas.â€
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