Education

The Weekend Agenda, Sessions and Speakers:

Friday, March 31, 2023: Opening Day                                     

4:00 – 8:00pm: Open Exhibits 

4:00pm: Registration Check in Hotel/ BDASC

5:00pm: Chapter Opening Welcome Reception – Premier Sponsor Welcomes

5:30 – 6:00pm: Participant Connections & Icebreakers

6:00pm – 7:30pm: Opening Dinner Presentations

• Gene Therapy in Hemophilia – Sponsored by CSL Behring, presented by Betsy Koval, RN BSN, Patient Resource Navigator (Reedy Halls I, II,& III)

Learn about the advances in gene therapy research for hemophilia B in a 30- minute dinner session which dives into gene therapy for hemophilia B, how it works, and the goals of gene therapy.

Betsy has many years of experience in the bleeding disorders community. She previously worked as a senior clinical specialist, an educator, and in training with the learning and development team. She provided education to patients, families, as well as to providers and those new to the bleeding disorders community. Prior to that she was the lead pediatric and adolescent transition nurse coordinator at the Hemophilia of Georgia Center for Bleeding and Clotting Disorders at Emory University and Children’s Healthcare of Atlanta for about 10 years. She has presented posters and spoken at regional and national conferences on bleeding disorders and transition of care. She was a certified clinical research coordinator for a multi-specialty clinic which supported research for cardiovascular, diabetic, pulmonary, dermatology and other conditions as well as having worked in critical care and solid organ transplantation in the ICU at Emory. Empowering patients, families, and providers with knowledge for improving health is Betsy’s favorite part of her role and she is honored to work within the bleeding disorders community.

• BDASC Guest Member – Dan Korn, Gene Therapy Experience

Dan will share his experience with gene therapy done at the Royal Prince Alfred Hospital in Sydney, Australia. It was on Feb 13, 2018 and he is now 5- years post-dose. The product is now in Phase III trials with final results to be presented to regulators in 2023. Up until his gene therapy treatment, Dan had severe Hemophilia B and was using 60-70 doses of factor each year for prophy.

7:30pm Wrap up and prepare for group activity!

8:00pm – 10:30pm: Team Building and Networking Activity “Group Therapy of Greenville”

~We will walk together next door to Group Therapy and have 2 ½ hours of Miniature Golf, Axe Throwing or Curling, and 2 beverage tickets for a fun group activity.

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SATURDAY:

Saturday, April 1, 2023:  Educational Day

8:00am – 5:00pm: Open Exhibits

7:30am: Exhibits Open 7:30am

7:30-8:45am: Breakfast in Lobby

9:00am: Morning Welcome Session (for all) – Reedy Hall

• Supporting Health Equity – Sponsored by Genentech, presented by Danielle Keisel, Senior National Account Executive, Genentech – (Reedy Hall I and II)

Learn about what Health Equity is and how it impacts patients now and the potential impact for the future. Understand how health equity can be impacted by social determinants that may present as barriers to accessing and receiving health care services. Learn of some ways health inequities are being addressed and share your thoughts and ideas for reducing health inequities and improving access to care for members of the bleeding disorders community in South Carolina.

Danielle is the Senior National Account Executive leading Genentech’s relationship with the Hemophilia Alliance, the Community Oncology Alliance and Amazon. Danielle has 20 years of experience in the Bleeding Disorders Community working in both Specialty Pharmacy and for Pharmaceutical Manufacturers, the last three of which have been with Genentech. Danielle has held roles in Patient Advocacy, Sales, Sales Training, Sales Leadership, Marketing, Reimbursement and Access, Account Management and Health Equity. Danielle has won numerous awards for her contributions to the organizations she has worked for and community she serves but the ones she is the proudest of are being named Volunteer of the Year for the New York City Hemophilia Chapter in 2014 and the 2022 Genentech Breast Network Award for her work on the “What’s Your Reason for a Mammogram” campaign centering the experience of and barriers to care for Haitian women.

10:00am: Quick Break~ (Walls Pulled)

10:30am: Group Separations – Men and Women Separate Session – Reedy Hall I and II

• Women’s Health – Saving One Uterus at a Time, Sponsored by Optum, presented by Sandy Puckett, RN, BSN, National Bleeding Disorders Nurse Educator (Reedy Hall I)

The Optum® Women’s Bleeding Disorder Support workshop helps women understand their unique symptoms of bleeding disorders. Often, education and resources are necessary for women to be diagnosed with an inherited bleeding disorder. The information in this workshop helps women receive information that can be helpful when talking to their healthcare provider. This workshop empowers women with education and talking points, helping them advocate for themselves throughout their health journey.

Sandy Puckett has served as a Specialty Bleeding Disorder Nurse Educator for more than 18 years. She develops and presents clinical and program offerings like the ‘Optum’s Women with Bleeding Disorders Program’ to support women with bleeding issues with diagnosis and treatment. She offers and provides clinical education for healthcare providers, and people affected with inherited bleeding disorders. Sandy earned her Bachelor of Science nursing degree from University of Portland. She worked at Doernbecher Children’s Hospital in Portland, Oregon for 17 years on the newborn to four-year-old pediatric unit, served as the Nurse Manager at the Child Development and Rehabilitation Center, and then as Nurse Coordinator at the Oregon Hemophilia Treatment Center covering the State of Oregon and SW Washington. She also served as a School Nurse for 10 years for the Portland public school system. She is published in the Journal of Child and Adolescent Psychiatric Nursing and co-author on an abstract/poster presented at the National Hemophilia Foundation on outcomes related to factor X replacement therapy. Ms. Puckett lives in Portland, Oregon where she enjoys her 2, soon to be 3 grandchildren, gardening, camping in her vintage trailer and traveling with her husband.

• Men’s “Masculine Mental Health” Sponsored by BDASC, presented by Anna Bell, SW (Reedy Hall II)

In this workshop we will cover many mental health challenges facing men today.  We will discuss general warning signs to lookout for and the different ways mental health presents itself in men versus women. We will address stress related challenges in regards to caregiver stress, depression, and anxiety.  We will discuss coping skills and the importance of self-screening and treatment.  This workshop will emphasize that getting help is a manly thing to do!

Anna Maria Bell is a graduate of The Catholic University of America Master’s Program in Social Work with a concentration in Gerontology, a graduate of Capella University with a Master’s Degree in Public Service Leadership, and a graduate of Walden University with a Master’s Degree in Philosophy. She is currently ABD at Walden University where she is pursuing a PhD in Human Services. She is Clinically Licensed to Practice in the District of Columbia, Maryland, Virginia, and the State of Ohio. She has worked in a variety of Social Work Settings and provided counseling to various populations including couples, children and adolescents, women, men, and geriatric populations. Up until August 2022, after serving twenty-eight years in government public service, Mrs. Bell retired from the District of Columbia Child Welfare Agency where she had worked in various areas mainly Training, Policy, program administration and Clinical Case Management.  Anna joined the Hemophilia Foundation of America consultancy staff in 2015 as a facilitator/speaker, conducting training, seminars, and curriculum development. Anna conducts life/professional coaching sessions as well as various workshops throughout the Washington DC Metropolitan Area through her company Bell-ievable, Inc., where she focuses on Development of Leadership, Self Esteem and Self Determination, through group processes and facilitation. Anna is a member of Delta Sigma Theta Sorority Inc.

11:30am – 1:00pm:  Open Exhibits

11:30am -12:50pm:  Lunch and Group Photo All – (Reedy Hall III)

1:00pm – 3:30pm: Afternoon Breakout Sessions

Sessions #1: 1:00pm – 2:00pm

• Women- Women with Bleeding Disorders & Surgery – Sponsored by BDASC, presented by Sue Geraghty

Women with bleeding disorders will need the same surgeries as other women in their lifetime. Learn what you can do to have a successful outcome for a surgery you may need. Learn who may need a treatment plan and what you can do to advocate for yourself. Whether you are a woman carrier of hemophilia A or B,  a woman with von Willebrand disease, regardless of the type, a woman with other factor deficiencies such as but not limited to factors II, V, VII, XI, and XIII, woman with platelet disorders, and woman with a significant bleeding history but no diagnosis, this session is for you!

Sue Geraghty worked as Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years where she retired in 2013. She has over 45 years of nursing experience and currently she is working as an independent consultant in the areas of hemophilia and health care education.   During her time as nurse coordinator at the Hemophilia Treatment Center she sat on several national committees including the Nursing Working Group for the National Hemophilia Foundation. Her areas of interest within the bleeding disorder community include new families affected with a bleeding disorder and adult patient issues, women with bleeding disorders, patients with inhibitors, and orthopaedic issues. She has an associate degree in nursing from Lander College, a Bachelor’s degree in nursing from the University of NC Charlotte, and a Masters in Business from the University of Colorado Denver. 

(Reedy Hall I)

• Men- Tackling Transitions and Embracing Change – Sponsored by CSL Behring, presented by Pete Dyson, Gettin’ in the Game Athlete

(Reedy Hall II)

From athlete to announcer, son to father, and player to coach, Pete has gone through many stages of life and has had to adapt how he manages his bleeding disorder, his lifestyle, and his routines. Pete believes the physical challenges are easier to overcome than the mental ones, so he works to keep his thoughts in balance. Pete discusses how to cope with change through finding small victories and learning to embrace the success of making it through past transitions.

Pete grew up playing basketball in his driveway, commentating his own games. From an early age, he loved playing sports and fought to keep his hemophilia B diagnosis from taking him out of the game. Whenever someone told him he could not do something, it motivated him to get to where he wanted to go. Now a husband, father, and teacher, Pete’s love for sports led him to become a high school basketball and baseball coach, certified basketball official, and got him involved with the CSL Behring Gettin’ in the Game℠ Junior National Championship.

2:00pm: Quick Break~

Sessions #2: 2:30pm – 3:30pm

• Women – Mental Health & Wellness; Caregiver Stress: We don’t have to be a Superwomen, Sponsored by BDASC, presented by Anna Bell

(Reedy Hall I)

In this session we will have an open dialogue regarding life stressors associated with bleeding disorders.  We will discuss issues surrounding fear, carrier guilt, and caregiving.  We will discuss recognizing stress and anxiety symptoms and way to cope and heal.

Anna Maria Bell is a graduate of The Catholic University of America Master’s Program in Social Work with a concentration in Gerontology, a graduate of Capella University with a Master’s Degree in Public Service Leadership, and a graduate of Walden University with a Master’s Degree in Philosophy. She is currently ABD at Walden University where she is pursuing a PhD in Human Services. She is Clinically Licensed to Practice in the District of Columbia, Maryland, Virginia, and the State of Ohio. She has worked in a variety of Social Work Settings and provided counseling to various populations including couples, children and adolescents, women, men, and geriatric populations. Up until August 2022, after serving twenty-eight years in government public service, Mrs. Bell retired from the District of Columbia Child Welfare Agency where she had worked in various areas mainly Training, Policy, program administration and Clinical Case Management.  Anna joined the Hemophilia Foundation of America consultancy staff in 2015 as a facilitator/speaker, conducting training, seminars, and curriculum development. Anna conducts life/professional coaching sessions as well as various workshops throughout the Washington DC Metropolitan Area through her company Bell-ievable, Inc., where she focuses on Development of Leadership, Self Esteem and Self Determination, through group processes and facilitation. Anna is a member of Delta Sigma Theta Sorority Inc.

• Men- Wrap Session for Men – Sponsored by BDASC, Dads in Action & Blood Brothers, presented by Community Members, Brian Burton and (others)

(Reedy Hall II)

3:30pm – 6:00pm: Free time, snack break!

3:30pm – 5:00pm- (Open Exhibits) Attendee Free Time / Networking / Enjoying Downtown Greenville

6:00pm – 10:00pm – Group Dinner Presentation; Team Building Golf Competition

Off Site Event: Top Golf of Greenville:  201 Clifton Ct., Greenville, SC 29615

Sponsored by CSL Behring, Let us enjoy a time to relax and network with participants at this all-Community Engagement Support Group event. Participants will drive on their own or in groups to Top Golf of Greenville (12-minute drive) and enjoy a buffet dinner presentation and bay golfing at the premier entertainment destination in Greenville, Top Golf. Enjoy the climate-controlled hitting bays with HDTVs in every bay and throughout the sports bar and restaurant. Using their complimentary clubs or your own, you will take aim at the giant outfield targets and let the high-tech balls score themselves. For fun we will have a ~Men vs. Women Competitions! (You do not have to golf, but we encourage you to try this fun activity)

Dinner Presentation: Pushing Through with Positivity– presented by Pete Dyson, Gettin’ in the Game Athlete

When Pete’s coach heard that he had hemophilia, he was almost cut from his college baseball team. He never took “No” as a final answer, and he started in the outfield all four years in college. Pete learned that keeping open communication with his coach and healthcare team to develop an action plan helped keep him in the game. Pete shares his experiences to show others that bleeding disorders do not need to be the end of activity, but rather a different way of moving through everyday life.

Pete grew up playing basketball in his driveway, commentating his own games. From an early age, he loved playing sports and fought to keep his hemophilia B diagnosis from taking him out of the game. Whenever someone told him he couldn’t do something, it motivated him to get to where he wanted to go. Now a husband, father, and teacher, Pete’s love for sports led him to become a high school basketball and baseball coach, certified basketball official, and got him involved with the CSL Behring Gettin’ in the Game℠ Junior National Championship.

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SUNDAY:

Sunday: April 2, 2023

7:30-8:45am: Breakfast in Lobby

9:00am – 10:00am (Reedy Hall I, II, &III)

• A Focus on Women’s Health- Sunrise Self- Reflection, Safe Movement & Empowerment! Sponsored by Optum, presented by Jane Kelley

Yoga Where You Are: Linking Mind, Body, and Breath in Your Everyday Life

This workshop teaches participants about the connection between mind, body, and breath.  In this activity-based workshop, attendees will learn the different forms of Yoga breathing and the benefits of working with the breath.  They will explore modifications of traditional Yoga practice, including the use of a “prop” such as a chair or the wall to achieve multiple Yoga poses.  The workshop goal is to learn skills that can enhance body awareness and alignment, with applications to everyday activity.

Jane E. Kelly is a Life Coach, Group Fitness Specialist, Yoga Certified Master Trainer, College Professor and Regional Group Fitness Manager. Jane has focused her career on health and wellness training for the last 30+ years and has been certified by the Aerobic and Fitness Association of America (AFAA) for the last 20+ years. She has managed corporate wellness and group fitness programs, and taught ballet and other forms of dance to all ages. Working with groups, families, and businesses to help educate them in health and movement methods is her passion. Jane has worked with the Bleeding Disorders community for over 10 years, offering various educational sessions in the areas of therapeutic art and movement.  Jane enjoys spending time with her three granddaughters, and pursuing her hobbies of art, movement, and nature exploration.

• Men’s Programing: Lifeguards – What Keeps You Afloat? Sponsored by Paragon Health, presented by Kevin Harris

Learn about the cycle of habits, identifying true fulfillment, and how unconscious behavior affects us daily. This program will encourage you to redirect your habits in a positive direction and leave with a deeper understanding of your day-to-day actions.

10:30am – 11:45am

• Group Advocating Activity; What Would You Do? Sponsored by BDASC, presented by Sue Geraghty

Breaking up into small groups, you will be given scenarios to come up with a suggestion on what you would do during times that require you to advocate for yourself or a loved one. Moderated by Sue Geraghty, this group activity will surely be thought provocative – interactive, and challenging.

Sue Geraghty worked as Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years where she retired in 2013. She has over 45 years of nursing experience and currently she is working as an independent consultant in the areas of hemophilia and health care education.   During her time as nurse coordinator at the Hemophilia Treatment Center she sat on several national committees including the Nursing Working Group for the National Hemophilia Foundation. Her areas of interest within the bleeding disorder community include new families affected with a bleeding disorder and adult patient issues, women with bleeding disorders, patients with inhibitors, and orthopaedic issues. She has an associate degree in nursing from Lander College, a Bachelor’s degree in nursing from the University of NC Charlotte, and a Masters in Business from the University of Colorado Denver. 

• Wrap up and Evaluations

12:00pm – Hotel Check Out; Lunch on your own