A note from Debra

BACK TO SCHOOL: Communicating with the Team

Posted on August 22, 2016 4:33 pm


Guest blog by Celeste Graham, PT, Director of Physical Therapy, CureDuchenne Cares

We are at that time of year when the shelves of our local superstores that just recently held beach towels and sunscreen are already being replaced with pencils, binders and backpacks . . . it is BACK TO SCHOOL time!





As a Physical Therapist who has primarily worked in a clinic setting, I learned rather quickly that our children’s school environment is a whole other world and adds many critical team members to the existing team of their family, friends and healthcare personnel.  I also learned early on that collaboration and communication are key in helping support each child to meet his goals.  The start of each school year is the perfect time to go over a checklist to make sure everything is set up for a successful year for sons and students with Duchenne:

1. Ensure that your child has an Individualized Education Plan (IEP) or 504 plan in place

Although the IEP will be individualized to your child’s needs (as the name implies), in general it should include support services and appropriate personnel to help your child meet the team-established goals whether related to accessibility, modifications, or educational support.  Remember that your child himself is also a part of the team and can be the most valuable contributor to the process as you see fit.

2. Check out the campus

You may be surprised how much distance is covered during one school day.  Even if classes are centered in one room, as is typical in elementary grades, there can be a lot of walking to and from many areas of the campus multiple times throughout the day—parking lot/bus stop, classroom, bathrooms, playground, auditorium, cafeteria.

3. Meet the team

This may include:  principal and support staff, classroom teachers and aides, adaptive physical education (APE) teacher, school nurse, physical therapist (PT), occupational therapist (OT), speech-language pathologist (SLP), resource teacher, bus drivers, social worker/counselor/psychologist, assistive technology specialist, and many more.  Even if your child is in the same school from one year to the next, there may be unexpected changes to school district personnel and contracted staff, so it is important to know who will be working with your child and equally important to ensure their knowledge of Duchenne.

4. Update your child’s information

In addition to the typical emergency contacts and physician information that is provided on the school district forms, there may be other contact info that may be beneficial for the teacher to have.  This can include the PT, OT and/or SLP if your child receives therapy in a clinic setting, as they may provide additional consultation to the school staff.  Some districts and parents allow the teachers to contact the durable medical equipment (DME) vendor directly, if an emergency wheelchair repair is needed and there are safety concerns while the child is at school.  The school nurse should also be updated on any changes or additions to your child’s medications and supplements.

5. Share resources for education

It is important that all staff working with your child learn as much as possible about Duchenne muscular dystrophy, especially as it pertains to activities that are harmful to his muscles.  Many times what parents share directly with the staff is more valuable, current and child-specific than what can be found on the internet or in old textbooks.  It may also be helpful to let the teachers know how much information about the diagnosis itself that you have shared with your son directly and what is appropriate to share with his peers.

6.  Collaborate and communicate

All team members should be responsible for keeping the lines of communication open in order to support your child in the school environment.  Many times it is a group effort to problem solve accessibility concerns and strategize modifications that may be needed physically and academically.  This may include:  seating and desk support; navigating the classroom and campus safely (whether walking or in a mobility device); avoiding activities that are muscle-damaging or fatiguing (excessive walking, stairs, coming up from the floor); managing heavy books and backpacks; encouraging healthy snacks; allowing extra time for homework and tests; providing rest breaks; determining adaptive equipment needs (access to toilets/sinks; writing implement/communication modifications); modifying adaptive PE and recess activities to encourage safe inclusion; encouraging peer engagement.

This checklist and the information included is by no means all-encompassing, but I hope it may serve as a helpful start in getting ready for the upcoming school year!  Wishing a fun, safe and successful school year for all!

For additional information on modifications in an elementary school setting, please watch our CureDuchenne Cares video here: http://cureduchennecares.org/duchenne-care/school-modifications/ This page also includes a link to a letter written by CureDuchenne Cares Program Director Jennifer Wallace that you may print and share with your child’s APE teacher.


Navigating College, Living with Duchenne

Posted on August 16, 20167:19 pm

  Guest blog by Hawken Miller For those with Duchenne Muscular Dystrophy the experience and education of a four-year university is likely within your grasp, and being away from home is a definite possibility. I’ll admit, I had my own second thoughts about going off to college, but it is worth it once you move Read more »

Pfizer, Bamboo and CureDuchenne – An Endorsement on the Right Track

Posted on August 1, 20167:24 pm

  Today, we are very pleased to announce that Pfizer has acquired Bamboo Therapeutics, a gene therapy company we invested in earlier this year through CureDuchenne Ventures. The deal is valued at up to $645 million. Bamboo, led by Dr. Richard Jude Samulski, PhD, the Director of the Gene Therapy Center at UNC, and Dr. Xiao Read more »