CureDuchenne Launches the CureDuchenne Caregiver Course to Support Caregivers of People with DMD

 

Since its founding 20 years ago, CureDuchenne has been tirelessly working to find and fund a cure for Duchenne muscular dystrophy (DMD). They have done this through supporting families, offering resources, and developing helpful courses like the Certified Occupational Therapist program. Now, shares CureDuchenne in a recent press release, CureDuchenne has launched the CureDuchenne Caregiver Course, a free virtual resource for all people affected by Duchenne muscular dystrophy or Becker muscular dystrophy and those who care for them.

Created by Jennifer Wallace, PT, and Doug Levine, PT, the CureDuchenne Caregiver Course offers comprehensive information on DMD, energy conservation, physical therapy, mobility equipment, and more to offer empowerment to caregivers and those affected alike. The CureDuchenne Caregiver Course includes three specific chapters that encompass various topics related to DMD:

  • Chapter 1: Introduction to Duchenne and Becker Muscular Dystrophies
    • Basics of Duchenne and Becker
    • How Muscle Loss Occurs
    • Modifying Activities
    • Standards of Care During Early Stages of Duchenne
  • Chapter 2: The Importance of Physical Therapy
    • The Role of Physical Therapy for Duchenne
      • This section shares insights into the differences between clinical and school-based physical therapist, as well as what role physical therapy plays in managing DMD.
    • Duchenne-Specific Knowledge is Important
    • What to Ask Before a Physical Therapist Appointment
  • Chapter 3: Physical Therapy for Duchenne and Becker
    • What to Expect from Physical Therapy
    • The Role of a Clinical Physical Therapist
    • The Role of a School Physical Therapist
    • Summary

Caregivers can learn about DMD and management at their own pace, creating a comforting and supportive learning environment. Says CureDuchenne Founder and CEO Debra Miller:

Our mission has always been to improve the lives of those affected by this devastating disease, and the CureDuchenne Caregiver Course is a significant step in that direction. We believe that by providing caregivers with the knowledge and tools they need, we can empower them to provide the best possible care and enhance the quality of life for their loved ones.

About Duchenne Muscular Dystrophy (DMD)

Duchenne muscular dystrophy is one of nine forms of muscular dystrophy. People with DMD cannot make dystrophin in their muscles. As a result, this aggressive genetic disorder, which typically affects boys, causes muscle weakness and wasting. Symptoms of Duchenne muscular dystrophy often manifest before age 6; many people affected require the use of mobility aids by age 12. These symptoms may include:

  • Frequent tripping and falling
  • Fatigue
  • Learning and cognitive difficulties
  • Cardiomyopathy
  • A waddling gait
  • Joint contractures
  • Difficulty climbing stairs or rising from a sitting position
  • Scoliosis or lordosis
  • Progressive muscle weakness that begins in the legs, thighs, and pelvis

About CureDuchenne 

Twenty years ago, CureDuchenne was created with one goal: to find and fund a cure for Duchenne muscular dystrophy, the leading genetic killer of young boys. 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 17 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 visit cureduchenne.org.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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