#BDC2024: Awards of Excellence

GEORGIA WORLD CONGRESS CENTER 2 0 2 4 B L E E D I N G D I S O R D E R S C O N F E R E N C E

SATURDAY, SEPTEMBER 14, 2024

onorees, congratulations Your dedication and hard work continue to s all. The contributions you’ve made will have an enduring influence on munity, and your legacy will shape the future for generations to come

ose this chapter of the conference, the journey doesn’t end here The ations, connections, and advocacy that have emerged over the past few l continue to drive us forward Let’s carry this momentum beyond and remember that, together, we are an unstoppable force for I have no doubt that the strides we’ve made this week will have a mpact on our community for years to come

epest appreciation,

tone, M Ed ecutive Officer, Bleeding s Foundation

he National Bleeding Disorders Foundation (NBDF), formerly e National Hemophilia Foundation, is dedicated to finding ures for inheritable blood and bleeding disorders through search, education, and advocacy Founded in 1948 by Robert nd Betty Jane Henry, parents of a child with hemophilia, the ganization has expanded to serve people with all bleeding sorders, including hemophilia, von Willebrand disease, and atelet disorders With 50 chapters nationwide, NBDF has nded over $22 million in research, supports families, and dvocates for healthcare access, continuing the Henrys' ission of bringing the community together to drive change

earn more about NBDF at bleeding.org

dedication to the mission of their chapter over the years and has served as a valuable resource for their local community The volunteer must belong to an NBDF-affiliated chapter

DR MURRAY THELIN RESEARCHER OF THE YEAR DR. PAUL MONAHAN

The Dr Murray Thelin Researcher of the Year award recognizes a scientist who has made significant contributions to research on bleeding disorders, improving quality of life and advancing towards a cure Named in honor of Dr. Murray Thelin, a biochemist with hemophilia, the award is open to doctoral-level researchers who have led impactful clinical trials, publications, or groundbreaking therapies.

GENETIC COUNSELOR OF THE YEAR HANNAH HELBER

Genetic Counselor of the Year acknowledges an individual who has taken a leading role in assisting, guiding, and educating families and individuals on the genetic inheritance of blood and bleeding disorders For many families who learn they are carriers of an inheritable bleeding disorder, a genetic counselor is often the first person to foster the family's understanding of a patient journey, and inspires informed decisions The Genetic Counselor of the Year is an expert and empathetic He or she is current with the latest research in anticipation of an enhanced role in the expanding arena of molecular therapies for coagulation disorders

LIFETIME ACHIEVEMENT AWARDS DR. MICHAEL TARANTINO

Lifetime Achievement Award, given in honor of Dick James, recognizes an individual who has dedicated his/her life to the inheritable blood and bleeding disorders community to improve the lives of those affected This person has contributed his or her time and energy on a national or international scale to advance research, care, and advocacy and develop new leadership that will lead this organization into the future Dick James [1951-1993], who had hemophilia and AIDS, was an advocate and leader on behalf of people with inheritable blood and bleeding disorders and HIV

LIVED EXPERIENCE EXPERT OF THE YEAR

SAMMIE VALADEZ

Lived Experience Experts (LEEs) are individuals, their caregivers, and family members directly impacted by inheritable bleeding disorders Their diverse and personal knowledge gives them the unique ability to translate lived experiences into meaningful system change Based on this important perspective, LEEs should, to the best of their ability, influence and/or drive bleeding disorders research They should reflect a diversity as vast as those affected by them The Lived Experience Expert of the Year honors an individual who has made philanthropic contributions to and engaged in NBDF research initiatives in the areas of clinical trial design, community engagement, recruitment, education, and advocacy

MARY M. GOOLEY HUMANITARIAN OF THE YEAR AWARD DR. CRAIG HOOPER

Mary M Gooley Humanitarian of the Year honors a non-provider HTC staff member or professional at another service agency who is dedicated and committed to the care of families and patients at their HTC or service agency This person has shown a caring and humane spirit in their work to improve the quality of life for patients and their families Mary Gooley [1925-2019] devoted more than 40 years to the bleeding disorders community She served as the executive director of the Hemophilia CenterRochester Region, Inc now known as the Mary M Gooley Hemophilia Center and continued to volunteer after her retirement NBDF is honored to remember her legacy with this award

NURSE OF THE YEAR DONNA CARDI, RN, BSN

Nurse of the Year honors an HTC nurse who has demonstrated service to the inheritable blood and bleeding disorders community beyond their day-to-day responsibilities at their treatment center workplace This individual serves as a role model for others in the nursing field and has a minimum of two years' experience working with blood or bleeding disorder patients at an HTC

PHILANTHROPIST OF THE YEAR AWARD SCOTT AND KIM MARTIN

Philanthropist of the Year, recognizes an outstanding individual or organization whose generous contributions have significantly advanced the mission of the National Bleeding Disorders Foundation (NBDF) This prestigious honor is bestowed upon those who have demonstrated exceptional commitment and dedication to improving the lives of people living with inheritable blood disorders Through their philanthropy, the recipient has played a crucial role in supporting innovative research, expanding access to care, and raising awareness about bleeding disorders Their unwavering support has not only made a profound impact on the bleeding disorders community but also inspired others to join the fight for a better future for all

PHYSICAL THERAPIST OF THE YEAR JENNIFER NEWMAN, PT, MSPT

Physical Therapist of the Year, given in honor of Donna Boone, PT, honors an individual who has demonstrated service to the bleeding disorders community above and beyond their daily responsibilities in an HTC PT role This person serves as a role model for others in the physical therapy field and has a minimum of two years’ experience working with individuals with blood or bleeding disorders at an HTC Donna Boone [1932-2019] was a pioneer in physical therapy and bleeding disorders and served as a mentor for many professionals, and NBDF is honored to continue her legacy with this award

PHYSICIAN OF THE YEAR AWARD MARK REDING, MD

Physician of the Year, given in honor of Kenneth Brinkhous, MD [1908-2000], honors a distinguished HTC physician who has had a major impact on the lives of individuals with inheritable blood and bleeding disorders The winning individual exemplifies compassion and knowledge of the latest treatments, is a vocal patient advocate, is a valuable member of HTC staff, and is a committed caregiver whose concern for patients is apparent in everything he or she does Dr Brinkhous was a distinguished physician and professor whose research led to the development of revolutionary treatments for bleeding disorders, and NBDF is honored to dedicate this award in his memory

RYAN WHITE YOUTH AWARD GABI FLORES

The Ryan White Youth Award, named in honor of Ryan White, is presented to a young individual (8-25 years old) who has helped educate others both within the inheritable blood and bleeding disorders community and among the general population by increasing awareness and understanding Ryan White [1972-1990] had severe hemophilia and contracted AIDS in 1984 through the infusion of contaminated clotting factor He brought national attention to hemophilia and its complications, changed people's prejudicial attitudes, educated the public, and generated national compassion This award carries and honors his important legacy

SOCIAL WORKER OF THE YEAR AWARD KATHALEEN SCHNUR, MSW, LCSW

Social Worker of the Year, given in honor of Jill Solomon, honors an individual who has demonstrated outstanding service to the blood/bleeding disorders community beyond their day-to-day responsibilities in an HTC social work role This person serves as a role model for others in the field and has a minimum of two years experience working with individuals with community members and/or families at an HTC Jill Solomon was a former NBDF staff member who was a tireless advocate for social workers. She was beloved, respected, and honored by the NBDF Social Work Working Group The award was renamed in her honor following her death in 1997.

THE ZIGGY DOUGLAS INNOVATION IN YOUTH PROGRAMMING AWARD JEREMY GRIFFIN

The Ziggy Douglas Innovation In Youth Programming award is presented to chapters that champion, nurture, and empower the spirit of youth Donald “Ziggy” Douglas, the beloved Executive Director of the Hawaii Chapter of NBDF, left us far too soon, but his legacy lives on through this recognition It honors chapters that prioritize developing the next generation of leaders, ensuring his passion and vision endure

MeettheWinners

Note: These are summarized For the full bio visit bleeding org/bdc-connections

, resilience, and dedication made him a beloved presence at every advocacy event and a mber of the Eastern Pennsylvania Bleeding Disorders Foundation As a devoted board atural teacher, he shared his experiences to uplift others, inspiring the community with his ompassion Joey passed away unexpectedly on April 22, 2024, but his legacy of strength, kindness will continue to resonate within our hearts We are forever grateful for the time we m and will honor his memory by continuing the important work he was so passionate about

nahan, Executive Director of Hematology Research and Development at CSL Behring, e therapy clinical development for hemophilia A and B across several companies, in the global approval of the first licensed gene therapy for hemophilia B in 2022to his industry work, Dr Monahan was a Professor of Pediatrics at the University of na, where he treated children with bleeding disorders for over 20 years and served on and Scientific Advisory Committee of the National Bleeding Disorders Foundation

elber is a certified genetic counselor at Texas Children’s Hospital and Baylor Medicine, where she specializes in hereditary hematologic disorders A the Ohio State University and Baylor’s Genetic Counseling Program, she is o counseling and educating families affected by bleeding disorders through th the multi-disciplinary HTC Clinic

o is a board-certified pediatric hematologist/oncologist with over 30 years of and serves as a Professor of Pediatrics and Medicine at the University of ege of Medicine–Peoria A national and international leader in bleeding and orders, he has authored over 150 peer-reviewed publications and has been or his advocacy and contributions to the field, including awards from the eeding Disorders Foundation

espected expert in inheritable bleeding disorders, has von Willebrand WD) and is a devoted mother to children with bleeding disorders. She coved Experience Experts Working Group for the National Research Blueprint President of the Bleeding Disorders Alliance of Illinois, reflecting her deep t to improving lives within the bleeding disorders community

GOOLEY HUMANITARIAN OF THE YEAR AWARD

AIG HOOPER

eting a post-doctoral fellowship at Mayo Clinic, Dr Craig Hooper joined the on of Host Factors, now known as the Division of Blood Disorders, where he laboratories and later served as Division Director from 2015 to 2023 Dr , “Thank you to many of you in the room today Because of you, hemophilia care ansformational over the last 40 years, and it should serve as a model for the thcare system; you all will lead the way again over the coming decades as new such as gene therapy make their way into mainstream clinical care making it for those with hemophilia and other disorders to lead a long and robust life ”

NURSE OF THE YEAR

DONNA CARDI, RN, BSN

Donna Cardi began her nursing career in 1975 at The New York Hospital's Neonatal ICU, where she spent 19 years and earned distinctions, including Senior Staff Nurse and Head Nurse. In 1993, she transitioned to the Hemophilia Treatment Center at The New York Presbyterian Hospital/Weill Cornell Medical College, where she spent 31 years as a Clinical Nurse Coordinator, making significant contributions to patient care, education, and research in pediatric hematology and oncology

m Martin, private investors from Houston, Texas, have dedicated their proving the lives of those with bleeding disorders, inspired by their son hemophilia. Scott, the former Chair of the NBDF Board, co-founded Biopharmaceutical and Martin Midstream Partners, and serves on multiple d corporate boards

wman, a physical therapist with a Master’s from Ithaca College, has been with mophilia and Thrombosis Center since 2011, expanding her role from parttime She is involved in research, advocacy, and various projects at the center participates in multiple professional organizations and committees related disorders

Reding is the Director of the Center for Bleeding and Clotting Disorders and a Medicine at the University of Minnesota, where he has been a faculty ce 1999 He is recognized for his clinical excellence and mentorship, receiving ards, and is also involved in research on immune responses to factor VIII and cal trials in hemophilia

L O R E S

with platelet dysfunction at 14, Gabi Flores was inspired to become deeply he bleeding disorders community and pursue a degree in political science to althcare policy They are now active in state and federal legislation, having laws on copay accumulators and step therapy and reflecting on their journey de for the strengths it has revealed.

L E E N

S

chnur, LCSW, brings a decade of experience from the Hemophilia Center of Western he addresses social work issues at multiple levels and collaborates with national evelop educational initiatives As the NBDF Social Work Working Group chair and a ber of the World Federation of Hemophilia Psychosocial Committee, she is dedicated ing individuals and advocating for change in the field of bleeding disorders

in is the Executive Director of the New York City Hemophilia Chapter here he has been working since 2016 and has been involved in the bleeding mmunity since 2011 He is known for his work in building engaged patient s and is particularly proud of co-developing the TORCH Teen retreat and empathy-based design models to create impactful programs for individuals ng disorders