Giving our Sons with Duchenne the Best Care Possible

When our son, Hawken, was diagnosed 13 years ago, we were told to go home and love your son…there is nothing you can do.  Those doctors were wrong, there was a lot to be done.

Our family was blessed from the beginning to have Jennifer Wallace, PT, come into our lives from day one.  I believe that Jennifer’s constant care and instruction to our family is a big part of why our son has done relatively well.

While CureDuchenne is filling the therapeutic drug pipeline, we are dedicated to bring the same level of care that Hawken received to all boys across the country…and the world through CureDuchenne Cares.  Our goal is to replicate Jennifer by “training the trainer.”  Jennifer has trained hundreds of physical therapists to be specialists in Duchenne.  Proper physical therapy for Duchenne can be counter-intuitive for most PT’s and without understanding the disease, actual harm can be done to our boys with Duchenne.

CureDuchenne has made a point of bringing true professionals into the Duchenne field.  Michael Kelly, Ph.D. brings more than 30 years of drug development experience and Jak Knowles, MD, brings not only medical knowledge, but understanding of the business of drug development.  Mike and Jak participate in the CureDuchenne Cares workshops to instruct on research and clinical trials.  This forum provides a small and intimate setting for parents and caregivers to ask those questions that directly affect their sons.

CureDuchenne has been the innovator and has set the model for regional Duchenne care meetings. We have provided these invaluable workshops for several years highlighting the importance of physical therapy for those with Duchenne while updating families on the latest research and clinical trials.

During the first quarter of 2016, we have hosted workshops in Austin, TX, Riverside, CA and Fort Lauderdale, FL.  It is a pleasure to meet families in their local markets.

We continue to receive positive feedback from parents, caregivers, physical therapists and sponsors on the CureDuchenne Cares program.  I continue to learn new information from each session and am inspired by all the families we meet.

Our continuing education class for physical therapists also has a multiplier effect.  The PT’s who attend on average see three Duchenne patients. Our recent Riverside class included 60 physical therapists, occupational therapists and assistants. The more health care professionals know about standards of care for Duchenne the better off for the entire community.  Our CureDuchenne Cares PT certification programs provides additional specialized training.  PT’s are now being certified as they complete the requirements.

Here is the upcoming schedule of professional continuing education courses and family and caregiver workshops

• April 8, Houston, TX: Professional Continuing Education Course
• April 9, Houston, TX: Family and Caregiver Workshop
• April 22, Kansas City, KS: Professional Continuing Education Course
• April 23, Kansas City, KS: Family and Caregiver Workshop
• May 13, Boston, MA: Professional Continuing Education Course
• May 14, Boston, MA: Family and Caregiver Workshop

We are grateful for our CureDuchenne Cares sponsors that make this program possible.  Thank you to BioMarin, Bristol-Myers Squibb, Capricor Therapeutics, Catabasis, Idera Pharmaceuticals, Invitae, Marathon Pharmaceuticals, Phase Bio, PTC Therapeutics and Sarepta Therapeutics.

I want to thank our fantastic CureDuchenne Cares team.  Thank you Jennifer for dedicating your career to focus on specialized physical therapy for those with Duchenne. Katie Mastro has done an amazing job as CureDuchenne Cares Program Services Manager.  Dr. Michael Kelly and Dr. Jak Knowles continue to share their expertise on the latest Duchenne research and upcoming clinical trials.

Be sure to go to www.CureDuchenneCares.org for informational videos, Duchenne care topics, new Spanish language materials and upcoming workshops.