Symposium 2023: Powerful Connections and Unforgettable Moments
By Rocky Williams
The 2023 Hybrid Symposium held in Orlando, Florida March 16-19th saw an impressive turnout, with more than 800 attendees in person and an additional 120 virtual attendees from all over the United States! Not only did we have community members join in from nearly every state, but we also had participants come from other countries including Ireland, Puerto Rico and Australia! We were so happy to see you all!
Coming together at Symposium is powerful, and the experiences of attendees makes the impact clear. According to Jenifer Fraker, “One of the highlights of my time at the Symposium was collaborating with Dennis (videographer) on a remarkable video project aimed at shedding light on this rare bleeding disorder and its impact on the lives of those living with it.”
Jen underscores, “My involvement in the video project provided me with a unique opportunity to witness the power and significance of the Coalition for Hemophilia B firsthand. As I worked alongside Dennis, I had the privilege of witnessing members of the hemophilia B community sharing their personal stories and experiences, showcasing the profound impact that the Coalition has had on their lives. Their heartfelt testimonials not only showed the importance of this organization, but also served as a powerful reminder of the resilience and strength displayed by those living with hemophilia B.”
The programs and educational sessions were topnotch. We had incredible sessions on sewing for self-care, gene therapy, emerging therapies, 504s, finances, advocacy, and so much more. We held rap sessions for our men and women, held a hemophilia B aging panel, sessions on infusion and kinesiology, and had an awesome exhibit hall. We even had a Science Fair for adults and kids alike!
This year’s tween and teen programs were through the roof! They had a chance to spread their wings–and/or relax–at this year’s Symposium. According to Michelle Bunk, “The teen lounge was a calming place for teens to socialize or decompress from the bustle of the Symposium. It offered a place for games, crafts, movies, and a low-stress environment. It was also a place to meet for the various activities planned for those who wanted more adventure. The teen experience offered various programs including a scavenger hunt, empowerment sessions, music, dance, physical therapy in the pool, a science fair, career mentorship, mental health, community service, and a wildlife park experience. Teens were able to choose the experiences that best fit their needs. As a volunteer, it was rewarding to spend time with the teens and learn about their experiences with hemophilia B.”
The Symposium also provided a platform for showcasing talent. We held our annual talent show contest at Symposium, and I am proud to say that there was an amazing abundance of talent that poured into making a terrific talent show video for us to witness and to vote on. Winners were celebrated in both the youth and adult categories. Congratulations to our first-place winners, Robert on the piano and Shardonnae for her rendition of If The World Was Ending.
We also had the pleasure of witnessing folks getting to know CHB’s Perspectives of Patients project, in partnership with Upequity. Kimberly Haugstad leads Upequity, which works to drive improved access to quality, affordable healthcare for underserved populations with rare and serious health conditions.
The Coalition for Hemophilia B and Upequity are conducting a project to hear from you about the current realities, experiences, and outstanding needs of caregivers and people with hemophilia B from underserved communities. The project prioritizes the inclusion of communities of color, women, and those living in rural areas. By gathering answers and insights, we aim to better comprehend and address barriers or gaps in healthcare access, patient-provider communications, patient advocacy organizational services & support, and patient engagement.
Kimberly commented, “We initially hoped to host three or four focus groups with a dozen participants, and we were thrilled to have conducted nine focus groups with over 40 individuals at the CHB Symposium, including one group conducted entirely in Spanish! In a project of this nature, the goal is to engage with individuals and listen deeply. You know you are on the right track when you start to hear similar statements again and again. By the end of Symposium, we were starting to get there. For me, this was a humbling and powerful experience to be a part of, and my heart was full knowing that all of this surrounded my own hemophilia B community. I am so lucky to work in rare disease!” We are grateful to our Health Equity Project sponsors CSL Behring, Pfizer and Sanofi.
The final night event was epic! We had magicians and a mime strolling through and amazing us while our Bleeders Band rocked the house! We had face painting for the kids. There was great food and lots of dancing. It was such a fun way to celebrate and capstone what has truly been one of the most incredible events ever!
Also, at the final night event, we were truly humbled to receive the Outstanding Organization Award from Danny’s Dose. In recognition of Rare Disease Day, Danny’s Dose honored key individuals and organizations who have worked alongside them to promote Special Medical Needs. This acknowledgment serves to highlight just how important it is to connect with each other, build community, and to learn together.
Mom and CHB volunteer Jennifer spent some time reflecting on what it all meant. “In addition to the inspiring video project, the Symposium provided an ideal setting for community members to come together and forge lasting connections. The venue itself offered designated areas for attendees to gather, exchange stories, and provide support to one another. These spaces became vibrant hubs of empathy, where individuals impacted by hemophilia B found solace and camaraderie in the company of others who understood their unique challenges.”
Thank you to all our speakers, presenters, facilitators, and participants! We are grateful to our many sponsors including CSL Behring, Medexus, and Pfizer (Platinum Level), Novo Nordisk and Sanofi (Gold Level), HEMA Biologics, Takeda (Silver Level), and others. And thank you to our Virtual Sponsors!
SYMPOSIUM COMMENTS
“I wanted to thank you and the entire CHB team for another fabulous, informative Symposium!!! We are so very blessed to be a part of this community. It was nice to meet so many new families and to be able to offer support and embrace them like we were supported when we were new to the community. This Symposium was the best ever!! You keep topping yourself!”
“Thank you so much CHB for this amazing event. The Symposium gives us joy, hope, and all the things that we need to move forward.”
“I have no words to express how thankful we are for the opportunity to be at the Symposium this past weekend! We could meet other families, learn from them and enjoy so many sessions for adults & teens.”
“Every family I met thought the same thing and this
is all possible thanks to you and your amazing team. Thank you for all the hard work you do for this event. Thanks also for the opportunity that the Coalition gave me to participate as a volunteer.”
“This is our 2nd year participating and it was incredible to see more Latino families at the event. Thanks to the opportunity you gave to Kimberly and Martha for the Latino meeting, we could exchange phone numbers to be in touch. Our Latino families suffer from the language barrier but with the help of the community, they feel a part of this big family. Please count with me in any volunteer activity I can help with.”“Thanks for such a wonderful program. My whole family has enjoyed it while picking up new information. Thanks for all the hard work!”
“Thank you for a wonderful time. I made many great connections and plan to attend again.”
“Thank you so much for organizing a wonderful event! My family and I are having a blast meeting all the other community members!”
“Families living with hemophilia B will never have to repeat the words, “We just didn’t know anyone with hemophilia when we were growing up,” and that is due to the efforts of CHB.”
“Thank you to The Coalition for Hemophilia B for
a fantastic weekend of education, fellowship and recreation! We are so blessed to be part of a community that provides support, opportunity, and leading medical information. #chb23”
“When you climb in bed at almost 2:00 am with your 12-year-old and 10-year-old who had so much fun they want to wake up for breakfast to “savor every moment left,” as Danny put it, you know it was a great conference!”
“We love the Symposium because we recharge our energy to continue this journey and realize that we are not alone.”
“As always Kim, thanks to you and the WHOLE team
for pulling together such a phenomenal meeting. So much thought and planning go into these events, and it shows. We love you all and are so thankful to have the
best team around supporting our B community. Thank you!”
“We had a lovely time. To have had the pleasure to watch the coalition grow into this mega organization that we all have come to count on and learn with. What a week! Thank you all. Great to see you and everyone.” “I wanted to say from the bottom of my heart thank you for everything the last couple of days! This was our first time at the Symposium, and I left with a lot of impact on my heart. The people, the Coalition, the information, the activities, etc. I needed this and it is so much appreciated. Thank you so much.”
“Thank you for the fantastic 2023 Symposium. It was
a wonderfully busy weekend filled with education, meditation, art, and connecting with other hemophilia B participants. We greatly appreciate you having the Symposium remotely so that we and others who could not be there could participate. Thank you for the meal vouchers, entertainment, and all that you do for the hemophilia B Community!”
“My family and I can’t thank you enough for the opportunity to come to this event. If we weren’t awarded the grant, we would not have been able to financially make the trip from NY to be here. I really hope we can come again next year. The things my 7-year-old got to do, and my husband who has no family history or experience, took so much away from the sessions he attended. Again, thank you so much. Words cannot express our appreciation.”
“This was the best thing for my 7-year-old. He has a port but is very eager to start learning how to access veins. He tried and accessed the vein for the very first time with the help of some very amazing nurses. This Symposium has been the best experience in meeting families and connecting with parents. My family and I can’t thank the coalition enough for this opportunity!!!”
“On Friday while we were at The Coalition for Hemophilia B conference, our son self-infused for the first time. This is a HUGE accomplishment for him.
As we watched him, we both were so proud of him knowing this will allow him to have so much more freedom as he gets older. To be 11 and brave enough to try after watching a couple other gentlemen with hemophilia infuse, gave him the confidence to try. We cannot thank you enough.”
“My family and I enjoyed the event so much! You gave me the opportunity to do some volunteering and I’m so grateful for that, I met more families being there and the Latino families did a Whatsapp chat during the Symposium. My kids enjoyed the activities so much, including the awesome ones on Saturday. All your hard work was reflected in a wonderful event that families enjoyed so much.”
