NATIONAL HARBOR, MD - Each year, the National Bleeding Disorders Foundation (NBDF) honors those who have made significant contributions to the inheritable blood and bleeding disorders community at its annual Awards of Excellence program. Honorees are nominated by their peers for their outstanding dedication and service to the community. After careful deliberation, this year’s winners were selected and announced at the 2023 Bleeding Disorders Conference (BDC) in National Harbor, Maryland.
While the foundation is now known as the National Bleeding Disorders Foundation, this year’s awards were presented under its former name, the National Hemophilia Foundation, since the recipients’ nominations had been submitted prior to the organization’s rebranding.
The following award recipients were honored at this year’s Awards of Excellence Ceremony:
The John Indence Award: Western Pennsylvania Bleeding Disorders Foundation,
Pittsburgh, Pennsylvania
The John Indence Award is a special award that recognizes a chapter’s exceptional work elevating advocacy issues, spreading awareness, and raising funds during Bleeding Disorders Awareness Month through World Hemophilia Day and the state-based advocacy season. The recipient is the epitome of this award. This chapter put its own creative spin on the bleeding disorders 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.
"We are truly honored to be recognized for the work that Western PA Bleeding Disorders Foundation does to elevate advocacy issues and raise awareness of bleeding disorders. We are grateful for the passion and dedication of our Advocacy Ambassadors, the support of the foundation Advocacy Team, and the incredible community we have in Western PA who help raise awareness of bleeding disorders and offer support to one another." -Kara Dornish, Executive Director, WPBDF
Philanthropist of the Year: Dr. Joseph Alioto, Chicago, Illinois
This award honors a person or people who have demonstrated exceptional generosity through direct financial support. The 2023 recipient is Joe Alioto, who has been involved with the National Bleeding Disorders Foundation since his son, John, was diagnosed with hemophilia at birth seven years ago. Since then, Joe and his family have dedicated themselves to helping raise funds to find better treatments and cures. Over the last few years, Joe and his family have given and raised over $200,000 and continue to do more each year.
The Ryan White Youth Award: Owen Crabbe
This award is presented to a young person who has helped increase awareness and understanding within the inheritable blood and bleeding disorders community and the general population. Owen is a ten-year-old boy who lives with von Willebrand disease (VWD) and has an impressive list of athletic and academic accomplishments. He competes in soccer, cycling, and swimming, while maintaining straight A’s. Owen continues to be an example of why it’s principal to manage your bleeding disorder to maintain an active lifestyle.
“He demonstrates to others in the community that having an inherited bleeding disorder is not a reason to stay on the sideline.”- Ryan Crabbe, Owen’s father
The Lifetime Achievement Award: Judith Baker, DrPH, MHSA, Camarillo, California
Since 1990, Dr. Judith Baker has made an impact on the bleeding disorders community in the capacity of 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 community. She recently retired from her regional roles 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. This Lifetime Achievement Award shows that Public Health is ‘mission critical’ to help all individuals with rare and under-recognized blood disorders flourish.” – Dr. Judith Baker
Advocate of the Year: Julie Fredrickson Jones, Dallas, Texas
Julie Jones has been the Executive Director of Texas Central Bleeding Disorders (TexCen) since November 2018 and has volunteered with TexCen since 2010 in various roles. Her involvement with the bleeding disorders community began once she married her late husband, Chad, who had severe hemophilia A.
“I am honored to receive this 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.” – Julie Jones
The Loras Goedken Outstanding Leadership Award: Joe Mickeliunas, Omaha, Nebraska
This year’s winner, Joe Mickeliunas, is a shining example of what makes a kind, impactful, and dedicated leader. His fellow chapter members say that he is one of a kind and has the power to change the world! As a teacher by profession, he uses his education skills to raise awareness for bleeding disorders.
Additionally, he is a dedicated father to his son, Elliott, who has hemophilia. Elliott was diagnosed as an infant. Joe and his wife, Jenny, found this diagnosis shocking, as many parents do. But they quickly got involved with the community and found solace, support, and a passion for furthering research and fundraising.
Chapter Volunteer of the Year Award: Sean Pentz, San Diego, California
Sean Pentz of the Hemophilia Association of San Diego County has shown dedication to the mission of his local chapter and has served as a valuable resource for his local community. Sean, who lives with hemophilia, is a vocal and longtime advocate who has lent his voice and experience to raise awareness, advocate for policy and legislation, and educate others. He has frequently put pen to paper to write op-eds around state bills to help him, his children, and others living with chronic conditions receive more accessible and affordable insurance and prescription medicine.
Researcher of the Year: Donna DiMichele, MD, Washington, DC
For over 25 years Dr. Donna DiMichele has been a leader in the inherited bleeding disorders field. She has been a strong advocate for the development of physician researchers, and her own research has focused on pediatric hematology, pediatric rare diseases research, and biomedical ethics. For many years, she was the Director of the New York Center for Hemophilia and Coagulation Disorders and Attending Physician at the New York Presbyterian Hospital in New York City.
Physician of the Year: Dr. Doris Quon, Los Angeles, California
Dr. Quon is a tireless advocate for her patients at the Luskin Orthopaedic Hemophilia Treatment Center (OHTC) in Los Angeles, where she serves as Medical Director. Since practicing at OHTC, Dr. Quon has interacted with the patients and staff as a supportive, informative, and helpful presence. For over 20 years, she has gained knowledge in care for the orthopaedic patient pre-surgically, surgically, post-surgically and rehabilitative with product coverage and dosing. She collaborates with the world's most prominent bleeding disorders orthopaedic surgeons and creates a plan for each patient based on their bleeding history and individual product success for each patient.
"For those of us who have the opportunity to work with Dr. Quon, it is a great pleasure as she embodies the pursuit of knowledge to better patient care for our center and patients universally. She is a role model to us all!" – Dr. Cindy Bailey
The Val Bias and Todd Smith Innovation in Camp Award: Camp Hot-to-Clot
Camp is at the core of the blood and bleeding disorders community. Each year, chapters nationwide work tirelessly to put on camp programs that provide critical educational opportunities and create memories that last a lifetime. The Val Bias and Todd Smith Innovation in Camp Award recognizes Camp Hot-to-Clot for their innovative camp activities and educational experiences.
"It is truly a privilege to serve the amazing youth and teens in the Western PA bleeding disorders community. Staff from the Western PA Bleeding Disorders Foundation (WPDBF) and the Hemophilia Center of Western PA frequently collaborate to keep our youth and teens engaged and connected through camp, retreats, and other programs. We are honored to receive this recognition." -Janet Barone, Program Director, WPBDF
Social Worker of the Year: Lauren Dunn, Richmond, Virginia
Lauren has been in the bleeding disorders community for 20 years and continues to make significant contributions locally, regionally, and nationally. She has been a key figure in helping to pass the Skilled Nursing Facilities Act, creating a state-wide assessment for bleeding disorders. Also, she is a frequent chapter volunteer and educator, published research author, and more. Her ongoing work has led to more individuals having better access to care and an increasingly educated community.
“It is an honor to receive this award. I will celebrate 20 years as the HTC social worker at VCU this year, so the timing of this recognition is very meaningful to me. I am humbled to share a place with the many incredible social workers who preceded me in receiving this recognition. I believe in the saying that 'None of us is as strong enough as all of us,' and I share this award with the countless colleagues and friends in the bleeding disorders community who have supported me throughout my journey." - Lauren Dunn
Genetic Counselor of the Year: Kaylee Dollerschell, MS, CGC, Denver, Colorado
Kaylee provides genetic counseling services at the University of Colorado Hemophilia & Thrombosis Center, serving as the first genetic counselor in that role. She is a model of excellence in continued learning, especially when it comes to gene therapy, resource sharing, and building relationships. She is an enthusiastic talent, consummate professional, and rising leader within the blood and bleeding disorders community.
“It has been a pleasure to watch Kaylee grow into a confident advocate for the bleeding disorders community. She is a leader within our region, often volunteering for projects for the hemophilia patient population, including the development of an educational handout specific to women and girls affected by hemophilia!” - Katie Bergstrom
Physical Therapist of the Year: Lora Joyner, MS, PT, PCS, Pitty County, North Carolina
Lora's impact on colleagues within the medical community, the bleeding disorders community, patients, and families is evident through heartfelt nominations submitted on her behalf from those she has worked with throughout the years.
“It is an honor to be recognized for my life’s work as a Physical Therapist in the Bleeding Disorder community by fellow therapists, health care professionals, patients, families, and HTC colleagues. As I near retirement from a full-time career in a Hemophilia Treatment Center, I will look back on this achievement with a mix of pride and humility. I am grateful that my name will be associated with Donna Boone and previous award winners and recognized as a role model and mentor for current and future healthcare professionals in the Bleeding Disorder community.” - Lora Joyner
Nurse of the Year: Jennifer Donkin, DNP, PNP, Los Angeles, California
Jennifer has served the blood and bleeding disorders community for over 25 years. She has aided international patients, received numerous certifications, conducted original research, co-authored many papers, regularly volunteers with her local chapter, and is an outstanding nurse in every way.
“I have worked with Jennifer for the past 16 years. She has dedicated her entire professional life to the hemophilia community and has served as the most experienced person at Children’s Hospital Los Angeles (CHLA). She recalls in meetings the difficult times she endured taking care of and sadly watching many of her patients die of AIDS when she first started at CHLA and has seen the evolution and revolution of care through her 30+ years of patient care. Most important is that Jennifer has dutifully, energetically and with great care and compassion taken care of probably over 1000 different patients with bleeding disorders including at least three generations in some families.” - Dr. Guy Young
Mary M. Gooley Humanitarian of the Year: Chris Bombardier, MSGH
Chris Bombardier is the Executive Director of Save One Life, an international nonprofit that provides direct financial aid to patients with hemophilia in developing countries. He is a highly accomplished mountaineer and the first person with hemophilia to successfully climb the Seven Summits, including Mount Everest. He has dedicated his climbs to fundraising for Save One Life, raising over a quarter of a million dollars that have helped over 75 children worldwide receive sponsorships and scholarships.
“I'm honored to be recognized as the Humanitarian of the Year. Standing up for the values and belief that every person deserves the right to access to care has been a thread throughout the bleeding disorder community. I am honored to be able to help continue that tradition and hopefully encourage others to do the same.” - Chris Bombardier
The Ziggy Douglas Innovation in Youth Programming Award: Colorado Chapter, Denver, Colorado
The Ziggy Douglas Innovation in Youth Programming Award goes to chapters who champion, develop, and support the spirit of youth. Donald “Ziggy” Douglas was the Executive Director of the Hawaii Chapter of the Foundation.
This year’s winner exemplifies not only Ziggy’s West Coast spirit, but his passion for empowering the next generation of community leaders. The Colorado chapter has shaped youth programs and activities that let kids and teens find their voice. Through educational programs and youth-led conferences, the chapter is constantly encouraging connection and growth for young community members.
NBDF is grateful to honor and spotlight the work that its chapters, health care providers, and members of the inheritable blood and bleeding disorders community have done to innovate, educate, and advocate on behalf of those living with a blood or bleeding disorder.
For more information, visit the BDC 2023 website or contact Ilana Ostrin at iostrin@hemophilia.org.
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For 75 years, The National Bleeding Disorders Foundation (NBDF) has championed research, education, and advocacy for inheritable blood and bleeding disorders. NBDF is dedicated to finding better treatments, preventative measures, and cures for inheritable blood disorders. Founded by patients in 1948, the foundation impactful programs and initiatives are made possible through the support of a nationwide network of chapters, as well as individuals, partners, and a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Learn more at hemophilia.org.
