THIS YEAR WE ARE HOSTING A VIRTUAL FAMILY EDUCATION WEEKEND ON MAY 6-7, 2021! WE WILL HAVE RAFFLES, GIVEAWAYS AND SO MUCH MORE! WE CAN'T WAIT TO BE ABLE TO HOST YOU IN THIS WAY!
Join us live online on may 6-7th!
Featuring a World-Class Line up
Click on each speaker to see when their sessions are!
Claudio Sandoval, M.D.
Graduated from New York Medical College and completed pediatric residency at Schneider Children’s Hospital and pediatric hematology-oncology fellowship at St. Jude Children’s Research Hospital. I was a pediatric hematologist- oncologist for 30 years, and now I am Director, Scientific & Medical Affairs- Hematology, Octapharma USA.
Dr. Sandoval's Session:
Edgar is a family man, determined researcher, and committed educator. He was born with hemophilia A, but his condition was not diagnosed until age 10. Because he lived in the US Virgin Islands, where knowledge of hemophilia was extremely limited, and testing virtually unknown, it was not until his family moved to Florida that his diagnosis was made and his treatment began. The tipping point was a debilitating ankle bleed. The delay in his diagnosis underscored for Edgar both the impact of geography on disease management, and the importance of information. A very analytical guy, as an adult Edgar has continued to embrace research, education, and information sharing as key tools in disease management. He is also a firm believer in adherence, regular prophylaxis, and self-determination. These combine to ensure that he is healthy, happy, and fully able to enjoy life with his wife and two young children.
Edgar's Session "Family Cooking Night":
Melissa has over twenty years in healthcare, sixteen of them as a Registered Nurse. She started her career in Bleeding Disorders in 2008 with Coram Infusion Services as an Infusion nurse. She worked on the Hemophilia team teaching and infusing patients with bleeding disorders. Her experience as a Registered Nurse began at Presbyterian Hospital in Albuquerque, NM in Pediatrics, the Emergency Room and in General Medicine. She felt that this best served her son’s needs as a severe Hemophilia A patient. His birth changed the course of Melissa’s career for the best. She enjoys her career and feels that she is right where she belongs educating anyone willing to learn about bleeding disorders.
Melissa's Session "Easing Infusion Frustrations with Children":
Senior Clinical Specialist with Takeda for 4 years. Prior to this, she was
the Hemophilia Nurse Coordinator at Cook Children’s in Fort Worth, TX. She has 18+ years in Pediatric Oncology, Hematology, and Stem Cell Transplant. When not working she is taxing her three children around and shouting loudly for their various sports activities!
Sara's Session "VWiD a patient presentation to learn about Vonvendi in the
treatment of adult patients with VWD"
Gretchen is a trusted speaker, trainer, author, and facilitator with over 25 years of experience working with patients, families, doctors, nurses, specialty pharmacists and more, for many rare diseases. She has been developing content and delivering cognitive and behavioral programs for nearly 10 years. Gretchen earned a master’s degree in Organization Development and Change from The Pennsylvania State University. She is an active member of the Massachusetts Biotechnology Council (MassBio).
Her previous work includes:
• Master faculty and change agent for the United States National Security Agency (NSA)
• Lecturer at Boston University and Bentley University in Massachusetts
• Featured Speaker with Women in Technology International (WITI)
Gretchen's Session "Think, Feel, Act"
Dana Kuhn, PhD
Person with Hemophilia A; Founder of Patient Services Inc (PSI) retired after 30 years; Creator of the health insurance premium and copayment assistance programs, Well-known community advocate for Blood Safety and Product Safety, Advocate for Ricky Ray Hemophilia Relief Fund Act, Advocate for Chronic Ill Communities; Created the model to address Medicare Part D out-of-pocket (“donut hole”), Consultant services for innovation in businesses.
Dana's Session "Simply Health Insurance"
Dr. Singleton is a board-certified Pediatric Hematologist from New Orleans, Louisiana. She is the Director of the Mississippi Center for Advanced Medicine’s Hemophilia Treatment Center and Division Chief of Pediatric Hematology. Dr. Singleton serves children and adults with Hemophilia, Sickle Cell Disease and other rare hematological conditions across Louisiana and the Mississippi Coast. Dr. Singleton has authored numerous publications, served as a subject matter expert speaker around the world, and as the principal investigator on numerous studies pertaining to Hemophilia. She also has significant training and expertise in musculoskeletal ultrasound in hemophilia patients. In her spare time, she enjoys spending time with her family, reading, cycling, fishing, and cooking.
Dr. Singleton's Session "Give it a shot- a different kind of Hemo A Therapy"
As a passionate advocate and health educator, Lee has held many positions in the bleeding disorder and chronic disease communities. He started his career as the youngest executive director for the Hemophilia of Alabama, chapter of the National Hemophilia Foundation. Since that time, he has worked for several leading specialty infusion therapy pharmacies, holding regional and national positions in sales, education, advocacy, governmental relations, public relations and program development. Lee’s most recent tenure was at Biogen, where he co-developed the role of Community Relations Manager and lead a successful field launch strategy for Alprolix and Eloctate, the first long-acting Factor IX and VIII (Recombinant), Fc Fusion Proteins. During his time at Biogen he expanded his relationships with clinicians, homecare partners, patients and caregivers. Since his departure from Biogen, Lee has continued to lead Global Health Society, Inc., a not-for-profit organization delivering humanitarian aid and developing bleeding disorder camps around the world. Lee is currently preparing the launch of his new strategies and communications company in early 2018.
Lee's Session "The Pros of Prophy and TRIVIA!":
Kevin is a Certified Nutrition Coach, fitness enthusiast, teen program director, and hemophilia B patient. He has a deep passion for helping people with their journey towards wellness and has been giving empowerment speeches to the bleeding disorder community for the last six years. Kevin strives to enable individuals with chronic conditions to keep a positive outlook and remember that their choices can improve their overall quality of life.
Kevin's Session "Health & Wellness":
Pat is the CEO and founder of GutMonkey, an adventure education company providing foundational, life changing experiences for communities with chronic health conditions, that improve health outcomes, build communities, dismantle stigma, and increase awareness. He has designed and implemented experiential and adventure education experiences, trainings, and expeditions for thousands of teams and individuals nationwide for over 20 years. Pat unwittingly began his career traversing mountains and rivers, while working at camps and in therapeutic wilderness programs across the country. Along the way he discovered the power that shared experiences in awe-inspiring environments can have on individuals’ lives, and he got hooked. His passion for quality professional training has inspired him to continue traversing mountains and rivers (more often from a plane these days) to deliver engaging and animated keynote speeches and workshop presentations at regional, national, and international events.
Patrick's Session "Playing It Out: Using Play to Build Support & Sustainability ":
Gina Wiberg is from Chicago, Illinois. Gina has been active in the Hemophilia community throughout many years as she has two adult sons with Hemophilia. She has dedicated many volunteer hours to fundraising committees for the Bleeding Disorders Alliance of Illinois. In addition, she has developed and presented educational presentations for manufactures to raise awareness in our community.
Gina's Session "Shopping Smart and Eating Healthy ":
What is family education weekend?
Join us for our upcoming Family Education Weekend online! Get the kids, grab the fam and join us for some fun with games, food, and education! At this event we plan to have some amazing speakers, fun activities for the whole family such as cooking and art, and play some games with great prizes! We hope that you will make a plan to join us with your kids whether its for one session or all of them to make some great memories together on Zoom. Anyone can join whether you are someone living with, caring for, or supporting a person living with a bleeding disorder. Some of the sessions may require early registration in order to provide you with materials, but all sessions are free to attend.
Thursday, May 6th
9AM- Virtual Exhibit Hall
10:15AM- Youtube General Session
11:30AM- Give it a shot- a different kind of Hemo A Therapy
1PM- Simple Health Insurance
2:15PM- The Hemophilia A patient journey
3:30PM- Virtual Exhibit Hall
5PM- Easing Infusion Frustration with children
6:15PM- Caprese Salad & Tuscan Pasta Cooking Class
7:30PM- Family Activity
Friday, May 7th
9AM- Virtual Exhibit Hall
10:15AM- Youtube General Session
11:30AM-VWiD a patient presentation to learn about Vonvendi in the treatment of adult patients with VWD
1PM- Shopping Smart and Eating Healthy
2:15PM- Think, Feel, Act
3:30PM- Virtual Exhibit Hall
5PM- The Pros of Prophy and TRIVIA!
6:15PM- The Balloon Show
7:30PM- Health and Wellness
Saturday, May 8th
11:00AM-3PM- Exhibit Hall
11:30AM- Crawfish Served
12:30-1:30PM- Educational Talk
1:30-3:30PM- Community Time
3:00PM- Crawfish Boil Ends
Event and booth sponsors
Click on our event sponsor virtual booths below. Please click on as many as you can to find some additional raffle opportunities to win some amazing prizes! Thank you to all of our sponsors for making Prophy Conference possible!
Contact firstname.lastname@example.org for Sponsorship Opportunities!