CERTIFIED DUCHENNE CARE CENTERS: ORDER PPMD MATERIALS

Parent Project Muscular Dystrophy is excited to provide your clinic with care and support materials regarding Duchenne Muscular Dystrophy. The following resources are available without cost to neuromuscular teams within the CDCC network. Please choose between a small, medium, or large shipment size, as well as the number of materials for Spanish-speaking families you would like for your clinic.

Please email nicole@parentprojectmd.org to receive any of these materials.

NEW DIAGNOSIS & EARLY CARE BUNDLE

  • Newly Diagnosed Guide (Download Preview)
  • Pediatric Imperatives
  • PPMD Connect Postcard
  • PPMD Registry Flyer
  • Decode Duchenne Postcard
  • Emergency wallet card

This bundle includes resources that  may be helpful for families who have received a new diagnosis of Duchenne or Becker muscular dystrophy. It includes a comprehensive newly diagnosed guide that provides information on Duchenne and genetics, adjusting to the diagnosis, finding support and more. This bundle also includes information on PPMD resources such as PPMD Connect Groups, The Duchenne Registry and our free genetic testing program, Decode Duchenne.

Quantity:
Small Bundle – 15
Medium Bundle – 25
Large Bundle – 40

PPMD CARE BUNDLES FOR CHILDREN, ADOLESCENTS, AND ADULTS

  • PPMD Postcard
  • PPMD Connect Postcard
  • PPMD Registry Flyer
  • Decode Duchenne Postcard
  • Range of Motion Guide
  • Pediatric & Adult Imperatives
  • Safe & Unsafe Medication list

The PPMD Care bundle includes an organized folder with care materials including both Pediatric and Adult Imperatives for healthcare providers, as well as PPMD’s Range of Motion Guide. Folders also include information about PPMD’s many programs including The Duchenne Registry, Decode Duchenne genetic testing program, the PPMD Connect volunteer-led outreach program, and the Race to End Duchenne running program. (Download Preview)

Quantity:
Small Bundle – 30
Medium Bundle – 60
Large Bundle – 100

EMERGENCY CARE BUNDLE

  • Magnetic Emergency Information Folder with insert
  • THINK Bookmark
  • THINK QR Code Stickers
  • Weatherproof emergency care card
  • Emergency wallet card

During an emergency, it’s important to communicate care recommendations specific to Duchenne with doctors, nurses, and hospital administration. PPMD has created several items that can help parents and individuals communicate emergency acre guidelines if their child suddenly becomes sick or injured. This bundle includes a magnetic refrigerator folder to document important medical information, a weatherproof card with emergency information that can be attached to wheelchairs or backpacks, emergency wallet card, and QR code stickers and bookmarks that highlight important information and take users to PPMD’s Emergency Information website. (Download Preview)

Quantity:
Small Bundle – 30
Medium Bundle – 60
Large Bundle – 100

DUCHENNE MUSCULAR DYSTROPHY CARRIER GUIDE

This is a new comprehensive care guide for female carriers of Duchenne. This booklet includes
information about genetics and what they mean, care implications, and resources available. This guide is also available in Spanish and will be included in the PPMD’s Spanish Bundle. (Download Preview)

Quantity:
Small Bundle – 15
Medium Bundle – 25
Large Bundle – 40

EDUCATION MATTERS GUIDE

DOWNLOAD PREVIEWS

To better assist parents and teachers in providing a quality education for the student with Duchenne, PPMD has updated the Education Matters Guides for parents and teachers with the goal of optimizing the child’s, teen’s or adult’s experience in a learning environment. The guides cover everything from the basics of Duchenne and its progression to specific classroom accommodations organized by age group.

Quantity:
Small Bundle – 1 of each volume
Medium Bundle – 2 of each volume
Large Bundle – 3 of each volume

PPMD CARE BUNDLE FOR SPANISH-SPEAKING FAMILIES

  • Pediatric Imperatives
  • PJ Nicholoff Steroid Protocol
  • EDT Remote Series Flyer
  • Weatherproof emergency care card
  • Range of Motion Guide
  • Spanish Carrier Brochure

PPMD has worked over the past few years to expand materials for Spanish-speaking families. This folder includes PPMD’s Pediatric Imperatives for Healthcare Providers, PJ Nicholoff Steroid Protocol, a large weatherproof card with the side for families translated into Spanish, and an information sheet about our series of online care and research presentations in Spanish. (Download Preview)

Quantity:
Small Bundle – 10
Medium Bundle – 20
Large Bundle – 30