CureDuchenne announces educational events for families and caregivers of individuals with Duchenne or Becker muscular dystrophy
Upcoming Events Across the Country Provide Latest Treatment Information and Resources for Managing Challenges of Living with Duchenne or Becker and Improving Quality of Life
NEWPORT BEACH, Calif., January 30, 2024 – CureDuchenne, a global leader in research, patient care and innovation for improving and extending the lives of those living with Duchenne muscular dystrophy, has announced its schedule of CureDuchenne Cares workshops and dinner sessions for the first half of the year, as well as its annual conference. CureDuchenne Cares provides interactive education and outreach programs to educate, empower, support, and improve connections among families and caregivers of individuals with Duchenne muscular dystrophy, one of the most common and severe forms of muscular dystrophy, or Becker muscular dystrophy.
“At CureDuchenne, we are committed to accelerating a cure for Duchenne muscular dystrophy and fostering a community where families and caregivers can find strength, support, and hope,” said Debra Miller, founder and CEO of CureDuchenne. “Our CureDuchenne Cares events are designed to be more than just educational; they are a lifeline, connecting individuals to a network of care, understanding, and the latest advancements in treatment. We believe in empowering our community with knowledge and resources, ensuring that no one faces the challenges of Duchenne or Becker alone.”
CureDuchenne will host full-day workshops and dinner sessions across the country throughout 2024, as well as its FUTURES National Conference in Orlando in May, providing support and resources to families that have received a Duchenne diagnosis. At workshops, local healthcare professionals and experts from CureDuchenne share best practices in multidisciplinary care and physical therapy techniques that can extend mobility. Attendees can participate in insightful discussions with clinicians and experts on topics not typically covered during clinic visits. CureDuchenne’s scientific team also provides updates on the latest research advancements and treatment options, including current clinical trials. The events feature an interactive “Open House” with local resources for families. Breakfast and lunch are provided, and travel assistance is available for eligible applicants.
The organization will also be hosting dinner sessions, which are intimate, in-person events with families focused on caregiver mental health and well-being while fostering a community of support for families and caregivers facing this rare disease. Workshops and dinner sessions are offered to the community at no charge.
CureDuchenne will host its annual FUTURES National Conference in Orlando, FL on May 23-26, 2024. Known as a leading family conference that builds community and provides valuable information and connections for families, FUTURES is a multi-day event focused on bringing education, connection and hope to the Duchenne community. The annual event will take place as a hybrid event, offering attendees a chance to participate both online and in-person, at the JW Marriott Orlando, Grande Lakes. CureDuchenne will offer informative and interactive presentations on a variety of relevant topics, including the latest research and therapies for individuals with Duchenne or Becker muscular dystrophy, insight from industry thought leaders, social events for the whole family, a gaming lounge, and more.
See below for a list of CureDuchenne Cares events for the first half of 2024:
2024 In-Person Events
• February 10, 2024: Workshop, Atlanta, GA
• February 24, 2024: Dinner Session, Charlotte, NC
• March 9, 2024: Workshop, Baltimore, MD
• March 16, 2024: Dinner Session, Tampa, FL
• April 6, 2024: Workshop, Long Island, NY
• April 13, 2024: Dinner Session, Pittsburgh, PA
• May 23-26, 2024: 2024 FUTURES National Conference, Orlando, FL
To register or find more information on CureDuchenne Cares events, please visitwww.cureduchenne.org/events.
Twenty years ago, CureDuchenne was created with one goal: to find and fund a cure for Duchenne muscular dystrophy, one of the most common and severe forms of muscular dystrophy. Today, CureDuchenne is recognized as a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne. CureDuchenne’s innovative venture philanthropy model has advanced transformative treatments for Duchenne muscular dystrophy, including 18 projects that advanced to human clinical trials and multiple projects to overcome the limitations of exon-skipping and gene therapy. In addition, CureDuchenne contributed early funding to the first FDA-approved Duchenne drug, pioneered the first and only Duchenne physical and occupational therapist certification program and created an innovative biobank and data registry, accelerating research toward a cure. For more information on how to help raise awareness and funds needed for research, please visitcureduchenne.org.