Order Support Materials

Parent Project Muscular Dystrophy is happy to provide you with support materials regarding Duchenne muscular dystrophy. The following resources are available without cost to families residing within the United States; however, quantity limits are set to help us manage the cost associated with producing and distributing such materials. If you have additional quantity needs, or to inquire about international shipping, please call us or send us an email.

While PPMD is happy to provide these resources free of charge, we always appreciate your donations to support our mission to end Duchenne. Click here to make a gift.

EMERGENCY CARE BUNDLES

During an emergency, it’s important to remember to communicate care recommendations specific to Duchenne 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

ADDITIONAL EMERGENCY INFORMATION CARDS

PPMD’s emergency information cards are included in our Emergency Care Bundles (two large weatherproof cards and three wallet cards). Additional copies (in English or Spanish) can be ordered below.

WALLET CARDS

Available in English and Spanish.

LARGE WEATHERPROOF CARDS

Available with the family information in both English and Spanish.

DIY CARE BINDERS

A diagnosis of Duchenne or Becker comes with an overwhelming amount of information, all of which is important to know. At times, particularly during emergencies, it can be difficult to find and communicate all the necessary information to properly care for your child with Duchenne/Becker. Our “DIY Care Binder” materials house important information regarding Duchenne/Becker care to help you navigate routine care and emergencies, as well as areas you can personalize with your own care information.

DOWNLOAD FILLABLE DIY CARE BINDER MATERIALS:

• My Information
• Care Team Contact List
• Medications List | Safe and Unsafe Medications
• Emergency Information
• Common Labs
• My Clinical Trial Information
• Care Considerations Checklists:
  • Early Ambulatory Stage
  • Late Ambulatory Stage
  • Early Non-Ambulatory Stage
  • Late Non-Ambulatory Stage

You can also order a complete, pre-filled binder here, sponsored in part by the PJ Nicholoff Steroid Protocol.

FACE MASKS – ADULT & YOUTH SIZE

In these uncertain times, PPMD continues our work to do all that we can for the community. In addition to the care and support materials we regularly share, we are also happy to provide free face masks for our families (while supplies last). PPMD face masks are available in both youth and adult sizes, with two different design options to raise awareness of Duchenne.

Each 4 ply mask is made of cotton, measuring 8.75” x 5.25” (adult size) and 8.26” x 4.52” (youth size).

DUCHENNE INFO – WALLET CARD

Based on idea that Arizona parent Jill Castle had, this business card is an easy way for you to educate someone you run into about Duchenne muscular dystrophy. When you are at a loss for words or don’t have the time to explain Duchenne, this card is all you need to say. View Card.

EDUCATION MATTERS GUIDES

To assist families and teachers in providing a quality education for the student with Duchenne or Becker, PPMD has updated Education Matters Guides. These guides cover 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+)

EDUCATORS MASTERCLASS INFO CARDS & PENCIL CASE

NEW! Video-based companion to Education Matters

Our pencil case is filled with information cards for PPMD’s new Duchenne Educators Masterclass, a video-based companion to our Education Matters Guides. The program is presented in three age-specific comprehensive courses covering Duchenne basics, behavioral and learning considerations, physical therapy and occupational therapy recommendations, and more in an effort to give your academic team the tools they need to better serve your child both in and out of the classroom. We encourage you to pass these cards along to key educators and personnel in your child’s school so they have access to this Masterclass, which is available free of charge. Educators will also receive a certificate of completion that they may submit for continuing education contact hours.

DUCHENNE MUSCULAR DYSTROPHY CARRIERS: YOUR QUESTIONS ANSWERED

Being a carrier of Duchenne or Becker can affect 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, we are excited to provide a comprehensive guide addressing the questions most often asked by carriers (available in both English and Spanish).

DOWNLOAD PREVIEWS:

• Duchenne Muscular Dystrophy Carriers: English
• Duchenne Muscular Dystrophy Carriers: Spanish