Care & Education Resources
At PPMD, we strive to equip every family with the most up-to-date care information possible. Important resources can be found below to download and order.
Please note, resources are available at no cost to families residing within the United States; however, quantity limits are set to help us manage the cost associated with producing and distributing. If you have additional quantity needs, or to inquire about international shipping, please call or send us an email.
Order Care and Education Resources
New Diagnosis & Early Care Guide
Our Newly Diagnosis & Early Care Guide is a comprehensive guide to provide information around a new diagnosis that will help families to navigate caring for a child with Duchenne or Becker while maintaining a happy, rewarding life. We recommend families reading at their own pace and comfort level. This guide covers:
- What is Duchenne & Becker Muscular Dystrophy?
- Adjusting to the Diagnosis & Finding Support
- Care Considerations
- Research & Clinical Trials
Duchenne Family Care Guide
This Care Guide for Families can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc. We are hopeful that you will find this a useful tool for all those you are in contact with along this journey – parents, grandparents, teachers, physicians.
Grandparents Guide
Developed specifically for grandparents, or other extended family members, this guide offers support, practical guidance, and a place to turn as you navigate a Duchenne or Becker diagnosis. Whether you’re learning about Duchenne or Becker for the first time, looking for ways to support your family, or trying to process your own emotions, this guide can help you better understand the journey and find ways to be there for your loved ones.
Care Imperatives – Pediatric
Imperatives for Duchenne MD is a very focused and very brief, single-page snapshot of the imperative components of comprehensive pediatric Duchenne care as described in the Care Considerations. This document is intended as a snapshot of care from diagnosis through early adolescence, helpful for medical providers who may not be familiar with this diagnosis.
Care Imperatives – For Adults
The Adult Imperatives for Duchenne MD describes the imperative components of transitions of care across late adolescence and adulthood as described in the Care Considerations. This document is intended as a brief, single page snapshot of care, helpful for medical providers who may not be familiar with caring for adult men living with Duchenne.
Care Checklists
PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression. These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
PJ Nicholoff Steroid Protocol & Steroid Family Guide
PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression. These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
Download PJ Nicholoff Steroid Protocol>
Safe & Unsafe Medications Resource Sheet
PPMD’s Safe & Unsafe Medications Resource lists medications that are frequently used in the management of Duchenne & Becker. This includes both over-the-counter and prescription medications used for other conditions not specific to Duchenne. Included in this resource are cautions that should be observed specific to patients living with Duchenne & Becker. We encourage you to use this resource both as a reference, but also a means to track you/your child’s medications.
Common Labs and What They Mean in Duchenne
A variety of laboratory (lab) tests are obtained in the assessment and treatment of Duchenne, and those laboratory tests can be often confusing and variable in nature. As such, PPMD has developed a downloadable resource sheet that includes an overview of commonly ordered tests, their “normal” ranges, and common reasons why those results might be outside of the normal or expected range. As always, it is important to discuss all of your lab results, and their specific implications for you, with your medical team.
EMERGENCY CARE BUNDLES
During an emergency, it’s important to remember to communicate care recommendations specific to Dystrophinopathy (Duchenne, Becker, Carriers) with doctors, nurses, and hospital administration. PPMD has created several items that can help if your child suddenly becomes sick or injured.
Our Emergency Care Bundle includes:
- 1 – Emergency Information Fridge Magnet w/ Insert (View Insert)
- Magnetic folder to keep important medical information for emergency personnel
- 3 – Bookmarks (View Bookmark)
- Reminding you of important action items to T.H.I.N.K. of during an emergency
- 1 – Sheet Stickers (View Stickers; approx. 15 stickers per sheet)
- Featuring QR stickers directing to T.H.I.N.K. Emergency Care Hub
- 2 – Large Weatherproof Emergency Care Cards (View Card)
- Large weatherproof cards with a chain that can be easily attached to backpacks, scooters, strollers, wheelchairs, and other mobility devices
- 3 – Wallet Emergency Care Cards (View Card)
- Simple, yet extremely important cards for your wallet to help you talk to doctors, nurses, and hospital administration, if your child suddenly becomes sick or injured
School Resources & Education Matters Guides
To better assist parents and teachers in providing a quality education for the student with Duchenne & Becker, PPMD has created several school resources including Education Matters Guides specifically for teachers and physical education teachers. The guides cover everything from the basics of Duchenne and its progression to specific classroom accommodations organized by age group.
Download Previews:
- Education Matters Volume 1: Diagnosis and Early Childhood (ages 2-9)
- Education Matters Volume 2: Late Childhood and Early Adolescence (ages 10-15)
- Education Matters Volume 3: Late Adolescence and Adulthood (ages 16+)
Other School Resource Downloads::
Duchenne Info – Wallet Card
Inspired by an idea from an Arizona parent, Jill Castle, this business card is a simple tool you can use to help educate people you meet about Duchenne muscular dystrophy.When you are at a loss for words or don’t have the time or energy to explain Duchenne, this card is all you need to say.
Duchenne Carriers: Your Questions Answered
Being a carrier of Duchenne can affect so many aspects of a woman’s life, including health care, family planning, and mental health. As part of our efforts to better understand and support carrier issues, this comprehensive guide addresses the questions most often asked by carriers. It was developed in collaboration with carriers and with clinical experts in neurology, genetics, cardiology, and psychology. Available in both English and Spanish.
English
Spanish:
Range of Motion Guide
Working to prevent contractures proactively (before they occur) is always best. Contractures are not always preventable. If they do occur, there are ways to manage contractures and maximize the function of the joint. PPMD worked with a team of expert Physical Therapists (PTs) to develop an easy to follow Range of Motion handout (download) for parents and physical therapists. This handout summarizes the current physical therapy guidelines.
Exercise Considerations in Dystrophinopathy
Exercising can help keep you healthy and active. However, many types of weight-bearing exercise can be harmful to your muscles and cause more damage. Expert Dystrophinopathy Physical Therapists & Exercise Physiologists developed this guide to help families, individuals, and clinicians prescribe safe and effective physical activity.
Physical Therapy Videos
Physical Therapy is critical for people living with Duchenne & Becker muscular dystrophy. This video series demonstrates the current Physical Therapy Guidelines PPMD helped develop. Included in the series are recommendations for stretching routines and safe, favorable mobility device positions for both ambulatory and non-ambulatory people living with Duchenne.
Webinar & Video Library
Dystrophinopathy (including Duchenne, Becker, and carriers) is a complex diagnosis that involves many areas of care and support. PPMD has created a comprehensive library of webinars, each expanding a topic into deep detail.
