CureDuchenne will host its annual Futures National Conference, a four-day event focused on bringing education, connection, and hope to the Duchenne and Becker muscular dystrophy (MD) community.
The event will be held on May 21-24 at the JW Marriott Orlando, Grande Lakes. It will highlight the latest research and therapies for Duchenne and Becker, and feature family-friendly social events and interactive experiences. Registration is now open, and the Exhibitor Showcase will be available for both in-person and virtual attendees.
This year’s agenda is designed to help attendees navigate programming tailored to their stage of life, role, and interests. There will be sessions fully in Spanish, ensuring that families can access the latest advances in their native language, with multilingual translation available for all sessions.
Conference offers research updates and family support
“Duchenne research and care are evolving at an unprecedented pace, and families are looking for clear guidance, community, and a way to navigate what it all means for them,” Debra Miller, founder and CEO of CureDuchenne, said in a press release sent to Muscular Dystrophy News Today. “FUTURES brings together experts and families to learn about the latest research, connect with others on a similar journey, and leave with greater clarity, confidence, and hope for what’s ahead.”
Duchenne is caused by mutations in the DMD gene that result in little to no functional dystrophin, a protein that protects muscles from damage during movement. Mutations in the same gene that allow some dystrophin to be made, or produce a partially working version of the protein, result in Becker.
The Futures National Conference will begin on May 21 with a welcome reception for all attendees, as well as meetups for newly diagnosed families, adults with Duchenne, and Spanish-speaking families.
The keynote session, on May 22, will start with a fashion show of adaptive clothing and accessories, followed by “Breaking Barriers and Building Lives Beyond Duchenne,” an informal conversation with four men living with Duchenne about care, relationships, and career paths that help them live independent, successful lives.
During the conference, research sessions will focus on approved therapies and drugs being tested in clinical trials, including gene therapies, exon-skipping, other RNA-targeted approaches, as well as treatments to preserve muscle and reduce inflammation. A range of speakers, including clinicians and industry representatives, will take part in the event.
Sessions cover care, school, adulthood, and support
Educational sessions will address a wide range of topics, from building success at school and transitioning to adulthood to emergency response, physical therapy, supportive care, and multidisciplinary care.
In addition, the Exhibitor Showcase and the resources it will feature will be available for both in-person and virtual attendees.
Family-friendly social events include receptions and parties for all ages, an e-gaming lounge, and an exclusive Dolphin Experience at Discovery Cove, offering families the opportunity to interact with dolphins, tropical fish, and rays. During the weekend, CureDuchenne will offer complimentary on-site childcare by childcare professionals.
According to registration materials, children and adults with Duchenne may attend in person for free. The fee for family members and caregivers, investors, and healthcare professionals is $150. The cost is $775 for industry representatives. A travel assistance program is available, with applications reviewed by CureDuchenne.
Sponsors include Catalyst Pharmaceuticals, which owns the North American rights to Agamree (vamorolone), and ITF Therapeutics, which developed Duvyzat (givinostat). Other sponsors include Edgewise Therapeutics, Entrada Therapeutics, Wave Life Sciences, and Regenxbio.
Team Joseph, an organization whose mission is to fund research toward a Duchenne cure and support families caring for a child with the disease, is partnering with CureDuchenne for the conference.
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