Order Support Materials

Parent Project Muscular Dystrophy is happy to provide you with support materials regarding Duchenne, Becker and carriers. The following 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 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 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

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.

PJ Nicholoff Steroid Protocol & Steroid Family Guide

Adrenal suppression, or adrenal crisis, is a potentially life-threatening complication of steroid use. It is important to know that you may be at risk of an adrenal crisis. Be sure to have the PJ Nicholoff Protocol on hand to share with medical providers and the Steroid Family Guide which outlines the key critical concepts from the PJ Nicholoff Steroid Protocol to recognize warning signs & stay safe during times of increased stress, reducing or stopping steroids, or switching from one medication to another. 

DIY CARE BINDERS

A diagnosis of Duchenne or Becker comes with an overwhelming amount of important information. 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 to include your own medical 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.

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. 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+)

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

NEW DIAGNOSIS & EARLY CARE GUIDE

Our Newly Diagnosis & Early Care Guide is a comprehensive guide to provide information around a new diagnosis that is easier-to-digest, and 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.