learn, grow, inspire...The HOPE Conference is an annual event where people living with bleeding disorders come to learn, grow, and develop. This event is focused on education and will inspire attendees to be a better resource to their local communities through HOPE groups and community outreach. This meeting attracts approximately four hundred people from around the United States and includes leadership development for HOPE Group leaders, community volunteers, social workers, and patient advocates. This year we have added pre-conference training and certification for mental health outreach for approved attendees. We will have tracks for social workers, Hope group leaders, volunteers, kids (ages 5-12), and teens (ages 13-17). You don't want to miss this amazing event designed to inspire and cultivate hope for the future of our great community.
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2019 Annual Meeting Recap
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Past Event Schedule
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THURSDAY NOV. 7TH
12 PM - PRE-CONFERENCE REGISTRATION FRIDAY NOV. 8TH
12 PM - CONFERENCE REGISTRATION 4 PM - OPENING SESSION 5 PM - EXHIBIT HALL 7 PM -GENERAL SESSION & DINNER PRESENATION 9 PM - FAMILY MOVIE NIGHT |
SATURDAY NOV. 9TH
7 AM - BREAKFAST & PANEL DISCUSSION 9 AM - EXHIBIT HALL 10 AM - BREAKOUT SESSIONS 11 AM - BREAKOUT SESSIONS 12 PM - LUNCH & PANEL DISCUSSION 1 PM - EXHIBIT HALL 2 PM - BREAKOUT SESSIONS 3 PM - BREAKOUT SESSIONS 4 PM - HOPE GROUP LEADER TRAINING 6 PM - EXHIBIT HALL 7 PM - GENERAL SESSION & DINNER PRESENATION SUNDAY NOV. 10TH
8 AM - CONTINENTAL BREAKFAST 10 AM - HOTEL CHECK OUT |
2020 Speakers
These are just a few of the amazing speakers you will hear from this year both in our general sessions and breakout sessions
jonathan jamesJonathan is the founder and CEO of Hope for Hemophilia and was born with severe Hemophilia A. He has used his background in financial planning to help create financial assistance programs for people facing a crisis caused by hemophilia. Jonathan's passion is to inspire people with his story of finding internal strength through living with a rare disease.
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Virginia KrausVirginia Kraus, RN, MSN is a Senior Clinical Education Manager/Medical Science Liaison for Grifols. She works with the communities for coagulation disorders, neurologic and immunodeficiency disorders, and hyperimmune therapy. She has developed therapy-specific training. She has many years of clinical management experience in acute care, disease management implementation, and national account management.
Virginia's session: "Plasma Safety" is at 2pm (Central) on November 6th |
Debbie de la rivaDebbie is a licensed professional counselor and a certified Mental Health First Aid (MHFA) Instructor. MHFA is an educational program of the National Council for Behavioral Health which provides information on mental health conditions and teaches the skills necessary to have an open and effective conversation with people in psychological distress. She also has an adult son with hemophilia and has been an outspoken advocate for people living with bleeding disorders.
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Cassandra StarksCassandra is a young women living with Hemophilia B. As a pole vaulter in college, Cassandra had to overcome injuries due to bleeds, but didn’t let her bleeding disorder get in the way of her athletic goals. Over the course of her college career, she improved her personal best to set both the indoor and outdoor school record and earned two NAIA All-American plaques. She graduated college with her Bachelor's degree in Biology and a Chemistry minor. Cassandra provides TaijiFit instruction, is an enthusiast about the mind-body connection and a firm believer of the power of a healthy mind. Cassandra lives in Colorado with her partner Paul and their 1-year old son, Clyde.
Cassandra's Session: "Tai Chi and Relaxation" is at 10am(Central) on Saturday, November 7th. |
Gilbert RussellGilbert is a testament to the grace and love that the Lord bestows upon His children. He is a kind and generous man who lives his life in faith. Gilbert possesses the courage of his convictions. He is devoted to his family. He and his exceptional Marie have been married for more than 35 years. They have a set of twins, a beautiful and talented daughter, and a charmingly gregarious son. Gilbert is a serious sports enthusiast and finds considerable enjoyment in the gentleman’s sport of golf. He joyfully connects with people and, through faith, love and compassion, he altruistically works to improve lives. He has been a gift to ASAP since 2003.
Gilbert and Shawn's Session: "Be Your Own Advocate" is at 4pm (Central) on Saturay, November 7th |
Shawn KuhnShawn comes to ASAP with years of business experience, but his real passion stems from his family’s intersection with catastrophic illnesses. His family has three generations of hemophilia, though it was only discovered in his two brothers in their late teens. He has lost an older brother to Hep C complications and has another brother who lives with hemophilia HIV. Shawn has embraced our company’s motto, “going beyond the prescription.”
Shawn and Gilbert's Session: "Be Your Own Advocate" is at 4pm (Central) on Saturay, November 7th |
Andy MatthewsAndy Matthew is a 54 years old and factor 8 severe. He has been in the business for over 28 years and since 1991. He will tell you that he is one of the rare people that knew early what he wanted to do. Entered the Hemophilia/home-care field when working in the business and having hemophilia was rare. Started out as a field service represented with a major Specialty Pharmacy company but then went to smaller companies where he started learning how interesting the world of insurance was. He has since developed a real passion around the entire insurance topic and loves to help patients learn how to navigate through the maze of insurance. He currently works for Specialty Therapeutic Care a nation Specialty Pharmacy.
Andy's Session: "Insurance & Scripts: The Mechanics broken down!" is at 4pm (Central) on Friday, November 6th. |
Zack BordoneZack Bordone has severe hemophilia A. Dedicated to his community; he focused his education on making our community better in every way. Zack has a background in physical therapy, nutrition, strength, and conditioning. With over 15 years of experience, he's dedicated his life to the bleeding disorder community. Following his passion, he created the first wellness program that customizes plans around the individual's specific needs and health goals. His main goal for the younger generation is to prevent, protect, and preserve their joints for the future.
Zack's Session: "Self Care: Taking a Moment for Yourself" is at 2pm (Central) on Saturday, November 7th |
Eric CastilloEraclio (Eric) Castillo III, was born and raised in South Texas in a small border area known as the Rio Grande Valley. He was diagnosed with Severe Hemophilia A shortly after his first birthday. He was raised in the Hemophilia community, attending local foundation and national events with his family and also attended summer camp. Eric then started to advocate and soon found himself working in the industry to better assist anyone with a bleeding disorder, to help improve their quality of life. Currently Eric is the West Coast Regional Manager and is also the Hispanic Community Affairs and Program Director for Drugco Health Specialty Pharmacy.
Eric's Session: "Autocuidado: Tomando un momento usted mismo" is at 2pm (Central) on Saturday, November 7th |
Connie ThibadeauxConstance “Connie” Thibodeaux is a licensed clinical social worker and board approved clinical supervisor. She has 29 years of social work experience with the last 7 years working on the multi-disciplinary team at the Louisiana Center for Bleeding and Clotting Disorders at Tulane University School of Medicine. In 2014 she presented at the National Hemophilia Foundation’s Annual Meeting in Washington, DC for the Creative Social Work Session track on psychosocial challenges that men experience living with von Willebrand Disease. She has also presented at the National Inhibitor Summits in 2018 and 2019 as well as the vWD Connect Summit in the Teen Track on the challenges and resiliency of people living with bleeding disorders.
Connie's Session:"Parenting in a Pandemic No Need to PANIC! We are all in this together" is at 11am (Central) on Saturday, November 7th. |
Perry ParkerPerry Parker has taken part in three U.S. Opens and won five times on the Canadian Tour in a more than 30 years as a professional golfer. Perry continues to be active on the Australian Legends Tour and European senior tours. He also hosts an annual clinic for kids taking part in CSL Behring’s Gettin’ in the Game Junior National Championship, a sports competition for kids and teens with bleeding disorders.
Perry's Session: "Gettin' In the Game of Life" is at 7pm (Central) on Friday, November 6th. |
Shonda JoshuaWhen my son Michael was four years old, he tested positive for severe hemophilia B. Hemophilia is prevalent in my family, so I knew that his life was going to change, but I didn’t want hemophilia to become the focus of either of our lives. He was always an active kid. He swims, rides horses, and lifts weights. Over the years, I have learned the importance of taking a proactive role in working with his doctors to manage his bleeding disorder. Caring for Michael made me diligent and fine-tuned my perspective about hemophilia.
Shonda's Session: "I D.A.R.E You to Hope" is at 3pm (Central) on Saturday, November 7th. |
Alfredo NarvaezAlfredo Narvaez Jr is a licensed social worker that has been a part of the team at the Louisiana Center for Bleeding and Clotting Disorders since 2016. He graduated from Christian Brothers University in 1999 with a Bachelors in Biology and obtained his Masters in Social Work from Southern University at New Orleans in 2012. In his time with the LCBCD, Alfredo has helped guide parent training events, assisted at both LHF Summer Camps and HTC Transition Retreats, traveled to both Baton Rouge and Washington, D.C. to advocate on behalf of patients with bleeding disorders and presented for organizations in the bleeding disorders community. He is a part of the National Hemophilia Foundation’s Social Workers Working Group, representing the social workers in the Great Plains Region and helping to plan every year’s Social Work education track for the annual NHF Bleeding Disorders Conference.
Alfredo' Session:"Crianza de los hijos durante una pandemia. Estamos todos juntos en esto" is at 11am (Central) on Saturday, November 7th. |
Melissa FariasMelissa 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: "Let's Stay Healthy" Quiz Bowl is at 1pm (Central) on Thursday, November 5th. |
Linda StepienLinda Stepien is a Bleeding Disorder Nurse Educator for CVS Specialty Pharmacy in the Southeast US Region. Linda enjoys educating patients, developing and leading informative programs, and advocacy within the Bleeding Disorder Patient Community. She sees individuals in their homes, communities and schools. She is passionate about determining ways to enhance the lives of the individuals she serves and meet any needs associated with the goal to improve their quality of life.
Linda and Jesus Benitez-Soto's Session: "Tazón de pregunats para mantenernos saludables" is at 1pm (Central) on Thursday, November 5th. |
Jesus Benitez-SotoJesus Benitez-Soto is a CVS Client Relations Executive for the territory of South Florida. Prior to his work with CVS, Jesus worked for 22 years within the pharmaceutical industry. Over the last 14 years, he worked within the Biopharmaceutical division specifically promoting bleeding disorder products. He has been actively involved with Bleeding Disorder Chapters in Puerto Rico and Florida for the past 5 years. Jesus is deeply committed to advocacy for the Hemophilia community. He especially loves to educate and help patients and their families to understand the importance of compliance with the plan that their providers have put in place to have an
improved quality of life. Jesus and Linda's Session: "Tazón de pregunats para mantenernos saludables" is at 1pm (Central) on Thursday, November 5th. |
Join us from the comfort of your own home on November 5-7, 2020
for our Virtual Hope Conference!
for our Virtual Hope Conference!
FAQ
Who do I contact if I have questions regarding registration?
Feel free to contact Michelle Danos - michelle@hope-charities.org / 225.361.8927 or email events@hopeforhemophilia.com
What does a Virtual Conference Mean?
Our General Sessions will take place on our Hope For Hemophilia Facebook page and the Breakout Sessions will take place on Zoom. The General Sessions are available to everyone but to receive the zoom link for the Breakout Sessions you MUST be registered.
Can I still win a giveaway in a Breakout Session if I don't register?
No, you shouldn't receive a Zoom link unless you are registered.
