The official electronic newsletter for the Florida Hemophilia Association | |
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As we come to the year’s end, I’m reflecting on the most meaningful moments that defined this amazing year together. We met change with a collective effort of so many working together with us to drive our community forward, and it’s with great pride that we continue marching forward with a purpose: to serve our bleeding disorders community.
We are excited to strengthen our partnerships and develop new ones as we dive into the next 40 years with this amazing organization. New collaborations, along with our long-term partners, bring new projects and strengthen our work and services to benefit our community, expand our impact, and help us prepare for even greater success to come.
And it’s you, the community members, who join us as participants, learners, volunteers, consultants, advocates, leaders, and planners, that continue to boost the organization forward as a strong community of collaboration and support. Connecting with hundreds of you during 2023 enriched my understanding of our amazing community while reinforcing the strength and diversity that defines us.
My sincere gratitude goes out to each member of the Florida Hemophilia Association’s 2023 Board of Directors John Novoa, Carlos Moreta, Steve Tejiram, and Crystal Hendrix-- Your time and work into leading our 40th anniversary year have supported so many successes!
From our board members to our donors, partners, and the incredible supporters who contribute to our cause, our collective efforts for the community will propel us forward together this new year 2024 and beyond.
Happy Holidays to all!
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Pepper Adair
Executive Director
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Retro Glam and Rhythm at the
2023 Conferencia Latina 🌎
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Florida bears one of the most diverse populations of Latin Americans, including within its bleeding disorders community. To serve this population, each year we host the Conferencia Latina, an exciting weekend of educational sessions and workshops in Spanish, activities for the whole family, and opportunities for Spanish-speaking members of the community to connect. This year, the Conferencia Latina took place at the Marriott Fort Lauderdale-North from September 29 to October 1, during Hispanic Heritage Month. We had the privilege of having representatives of the Coalición de las Americas and other families from a multitude of Latin American countries joining us—as a result, families from Florida and Puerto Rico got the chance to exchange stories and perspectives with members of the bleeding disorders communities from Argentina, Colombia, Mexico, and Uruguay!
The cornerstone of the Conferencia Latina is sharing knowledge to educate community members to be better prepared to navigate the trials of living with a bleeding disorder. We had a packed schedule with insightful sessions on self-empowerment, mental health, health issues unique to men and women, joint health, transitioning to adulthood, and more. For the first time at the Conferencia Latina, we also featured a special self-defense seminar hosted by the Bushido Ryu Dojo who taught the crowd some low-impact, safe, and effective self-defense techniques!
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This year’s theme was Miami Vice, bringing the glitz of Miami in the 80s to the Conferencia Latina. On Saturday night, community members with glamorous outfits danced the night away to live salsa music from Grammy award-winning Marlow Rosado Y Su Orquesta!
Thank you to Benny Montañez for taking amazing photos of the event, capturing every moment! We are grateful for our sponsors, without whom an event of this magnitude would not be possible. With their support each year, we are able to provide the number of activities, sessions, and workshops our community needs in order to learn all that they can about bleeding disorders in a welcoming space.
We had an amazing time continuing the celebration of our organization’s 40-year anniversary with you all at the Conferencia Latina, and we look forward to further strengthening the bond of this vast and diverse Latin American community. ¡Hasta la próxima!
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The 2023 Conferencia Latina was made possible with the support of our sponsors:
Takeda
Premier Exhibitors
Sanofi, BioMarin
2023 Conference Exhibitors
Bayer, CSL Behring, CVS Specialty,
Genentech, HEMA Biologics, Medexus
Novo Nordisk, Pfizer
Community Education Partners
Hemophilia Federation of America, National Bleeding Disorders Foundation
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Legacy in Motion:
Celebrating 40 Years of Support at the
Unite Walk 🩸
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Over the last 40 years, the Florida Hemophilia Association has been a wealth of support and guidance for people in Florida affected by a bleeding disorder—it only felt fitting that this year’s Unite Walk took place on the exact 40-year anniversary of our organization. The 13th annual Unite Walk took place on October 14th at the Nova Southeastern University Davie Campus, welcomed with beautiful weather and a crowd of patients and family members uniting for the common goal of raising awareness and funds to support invaluable resources for the bleeding disorders community.
This Unite Walk was the culmination of tradition, celebration, and innovation, the 3 themes at the center of our celebration of this anniversary at each of our events this year. Seeing the joint effort of a multitude of generations was inspirational. This year’s event was also particularly special as it was designed and mapped out by the Unite Walk Logistics Committee comprised of the inaugural Teen & Young Adult Leadership Retreat Class of 2023! A huge shout-out is in order for these young and inspiring leaders who brainstormed a vision of this momentous Unite Walk and got to see it come to fruition.
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Since this was a celebration event, you bet there was plenty of fun abound! After an energizing breakfast, our bleeding disorders community members enjoyed inflatable games throughout the event site, a petting zoo, and exciting beats from Alex Meyers the Host. The 501st Legion Everglades Squad, Miami FC’s Golazo, and Red the Blood Drop even made special appearances to pump up and cheer on our walkers!
Everyone joined us for our Pinwheel Ceremony, where we celebrated our community’s commitment to supporting this amazing cause, turning obstacles into opportunities, learning and growing together. We honored and remembered those we have lost, and we looked toward the future, bright and full of hope because of the dedication of this bleeding disorders community.
Thank you to our sponsors whose support helped us make this 40th Anniversary Celebration Unite Walk as special as possible, helping us bring the vision of this milestone event to life. And thank you to everyone who walked with us, everyone who donated, and everyone who spread the word to help us raise awareness of the unique challenges that patients and families affected by bleeding disorders face each day.
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The 40th Anniversary Celebration Unite Walk was made possible with the support of our sponsors:
Presenting Partners
Takeda
Hemophilia Alliance
National Community Partners
BioMarin
Sanofi
National Partner
Bayer
Virtual Partner
Genentech
Gold Sponsors
Accredo, CSL Behring,
HEMA Biologics, Octapharma
In-Kind Sponsors
CVS Specialty, Alex Meyers the Host, Miami FC
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40th Anniversary
✨ Year in Review ✨
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This year was packed with incredible memories! We are so grateful for your continued participation, support, and volunteering within this amazing community, and thank you for joining us to commemorate 40 years of Florida Hemophilia Association. Here are some highlights from throughout the year: | |
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Tradition, Celebration, and Innovation
Throughout the year, and at our events, community members helped us honor the community’s past and traditions, celebrate how far medical advancements have come, and look forward to the future innovations that await those affected by bleeding disorders.
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State Advocacy Days & Training
We traveled to Tallahassee and sat down with legislators to advocate for change and combat harmful legislation and barriers to health equity for people with bleeding disorders and other rare chronic conditions.
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World Hemophilia Day
In honor of World Hemophilia Day, we wrote letters expressing support to be sent to families in other countries with greater challenges to accessing comprehensive care, while we continue to work to improve access for all.
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Florida Bleeding Disorders Conference
Patients and family members participated in an innovative (H)ealth, (E)quity, (D)iversity, and (I)nclusion research study that contributed to measurable data to the National Bleeding Disorders Foundation to help increase better outcomes for all in the bleeding disorders community.
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Teen & Young Adult Leadership Retreat
The Leadership Retreat Class of 2023 formed the inaugural Unite Walk Logistics Committee, helping design this year’s milestone 40th Anniversary Celebration Unite Walk in unique teamwork and planning sessions.
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Women’s Retreat
Ladies in the bleeding disorders community participated in a local research study in collaboration with the University of Miami Hemophilia Treatment Center.
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Conferencia Latina
In a first for the Conferencia Latina, attendees learned low-impact self defense techniques in a special seminar created and demonstrated by the Bushido Ryu Dojo.
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Unite Walk
Patients and family members joined us at the new home of the annual Unite Walk, the Nova Southeastern University Davie Campus.
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End of Year Celebration Program
We featured the debut of our new interactive educational exhibit teaching attendees about the internal processes of how a clot is formed and how medication such as factor works to keep people with bleeding disorders safe and healthy.
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Recent breakthroughs in gene therapy for some bleeding disorders have shown promising results for long-term treatments and relief from symptoms of chronic conditions such as hemophilia. Scientists continue to explore innovative treatment avenues to potentially transform the landscape of bleeding disorder management, further improving the quality of life for people diagnosed with bleeding disorders.
Florida Hemophilia Association frequently hosts sessions and programs to inform its network of patients about the latest updates in gene therapy and how it works. Be sure to check our website and follow us on social media to stay up-to-date on our latest events, including programs on gene therapy.
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