A note from Debra

Expanding and Improving Duchenne Standard of Care

Posted on September 23, 2015 4:01 pm


As a mom of a son with Duchenne, I understand the importance of physical therapy in this disease.  Early after Hawken’s diagnosis, we were referred to a physical therapy facility that knew very little about the nuances of physical therapy for Duchenne.  The PT’s in that state supported clinic actually used strength building exercises in treating Hawken.  Even though we had been a part of the Duchenne world for such a short time and I knew very little about this disease, my intuition told me this treatment could be damaging to our son.

We took Hawken to a multitude of doctors and specialists trying to find the best treatments. In the meantime, we found a physical therapist, Jennifer Wallace, who became a Duchenne specialist and has provided superior care to him ever since.

Jennifer has traveled around the country training other PT’s, parents and caregivers on best practices and improved standards of care for Duchenne over the past several years. This year, thanks to our generous pharmaceutical and biotech company sponsors, we have increased the number of workshops so Jennifer and our scientists have been able to replicate the good care she offers to her own patients.

We are thrilled to launch the CureDuchenne Cares Physical Therapist Certification Program. The CureDuchenne Cares Certification Program provides advanced training to help physical therapists and other health care professionals deliver superior care to meet the specialized needs of Duchenne patients. Certified PT’s will be tested and monitored on an ongoing basis.  Dr. Brenda Wong from Cincinnati Children’s Hospital and Medical Center will act as the advisor to this program.

I can’t emphasize enough the importance of physical therapy for those with Duchenne.  However, it is critical that physical therapists understand the nuances of treating Duchenne patients.  Often, what physical therapist learn at school is not adequate for this disease.  Physical therapists who complete the training will be recognized as a qualified CureDuchenne Cares Certified Physical Therapist. This will give Duchenne families the confidence that those physical therapists who have completed the certification have the knowledge and expertise to treat their children.

Hawken is now 18 and is still walking short distances.  We credit daily stretching, activity modification, specialized nutrition plans and care consideration with Hawken’s ability to maintain strength and ambulation.  And we are grateful to Dr. Wong and Jennifer for his incredible care.

Since most PT’s treat multiple Duchenne patients, we believe that replicating Jennifer across the country will have a multiplier effect and improve the lives of so many Duchenne boys and young men.  Families will benefit from the CureDuchenne Cares Physical Therapy Certification Program by:

  • The ability to locate a qualified provider for physical therapy for Duchenne patients
  • Having confidence in the expertise of the  PT in Duchenne
  • Receive a higher level of care due to certified therapist’s network connections
  • Benefit from the continuity of care between certified physical therapist and other healthcare providers operating on the standards of care for Duchenne

The CureDuchenne Cares program is supported by educational grants from BioMarin, Lilly, PTC Therapeutics, Sarepta Therapeutics and PhaseBio.

We urge the Duchenne community to encourage physical therapists in your area to participate in the certification program.  Physical therapists can contact Katie at katie@cureduchenne.org for more information on the CureDuchenne Cares Certification Program.

Welcome Katie Mastro

Posted on September 22, 20153:59 pm

  We are delighted to announce that Katie Mastro has joined joined CureDuchenne as program services manager. She is responsible for managing and expanding the CureDuchenne Cares program, engaging with families whose loved ones have Duchenne Muscular Dystrophy, and coordinating events. Katie jumped right in and participated in this past weekend’s CureDuchenne Cares workshop in Read more »

Researchers Create New Mouse Model for Duchenne with Duplication of Exon 2

Posted on September 16, 20159:58 pm

  Dr. Kevin Flanigan and his team at the Flanigan Lab at Nationwide Children’s Hospital are hard at work researching duplication mutations. They have created a new mouse model for Duchenne muscular dystrophy with a duplication of exon 2. Their research was recently published in Neuromuscular Disorders (http://www.ncbi.nlm.nih.gov/pubmed/26365037). “CureDuchenne funded our research early on and Read more »