Duchenne Resources: Comprehensive Support for Duchenne Muscular Dystrophy

CureDuchenne Cares

CureDuchenne Cares is an interactive education and outreach program dedicated to providing patients, families, and healthcare professionals with vital information, resources, and training to enhance the lives of those affected by Duchenne muscular dystrophy. Hosting over 20 events nationwide, CureDuchenne Cares is offered free of charge to families and caregivers. Through various Workshops and Sessions, the program addresses a wide range of topics to assist patients, families, and caregivers in navigating the Duchenne journey. Open to everyone in the Duchenne community, CureDuchenne Cares aims to empower, support, and improve connections among those impacted by Duchenne muscular dystrophy.

Decode Duchenne: Genetic Testing & Counseling

PPMD's Decode Duchenne program offers free genetic counseling and testing for individuals diagnosed with Duchenne or Becker muscular dystrophy who may struggle to afford these services. The application and testing process is straightforward and quick, including comprehensive interpretation of results and counseling to guide patients and their families through their options.

Duchenne.com

Duchenne.com serves as a repository of knowledge and hope, created to support the Duchenne community.

Duchenne Care Guidelines

In recent decades, significant strides have been made in the care of individuals living with Duchenne and Becker muscular dystrophy. While there is currently no cure for Duchenne or Becker, there are recommended treatments and therapies designed to help those affected live longer, healthier lives. The provided link offers valuable resources from PPMD regarding care guidelines for Duchenne.

DuchenneXchange

DuchenneXchange is a secure platform designed for collaboration, offering resources to support all individuals affected by Duchenne. It serves as a space for those diagnosed with Duchenne, families, healthcare providers, researchers, and treatment innovators to come together, engage, explore, and learn from one another.

The Duchenne Registry

If you are living with Duchenne or Becker muscular dystrophy, or if you are a female carrier, consider joining The Duchenne Registry. Your anonymously shared data will contribute to advancing research efforts aimed at ending Duchenne. This collaboration helps accelerate the development of new therapies for Duchenne.

"Embrace This Moment" Webinar Series

The "Embrace This Moment" webinar series by CureDuchenne Cares is designed to fill knowledge gaps and provide support as families confront the realities of Duchenne muscular dystrophy. This educational outreach initiative aims to enhance quality of life by offering information, resources, and best practices for managing the challenges associated with Duchenne.

Global Duchenne Map

Handshake

A fellow mom shares her experience: 

Are you in search of caregiver support for a loved one with Duchenne? For families navigating Duchenne muscular dystrophy, I highly recommend Handshake. This job listing service connects students and recent graduates from colleges and universities with those in need of personal care assistants.

I’ve successfully filled positions for my son’s PCAs at Michigan State University through Handshake. This platform may appear to cater mostly to large companies, but individuals seeking specific caregiver help can also post listings. You can recruit from local colleges and universities, specify desired majors, and request resumes and cover letters. Handshake will provide a curated list of candidates matching your criteria.

This year, we’ve received an overwhelming response, with many pre-med, nursing, and kinesiology majors eager to apply!

When utilizing the Handshake platform, choose “for employers” and you may simply use your son’s name as the company name. Any social media profile can serve as a website link.

From the Handshake Website:

"The only all-in-one early talent recruiting platform connecting you to 13M+ students and alumni across 90% of the top educational institutions in the US (and growing)."

National Ability Center

The National Ability Center is committed to building a diverse and inclusive community through transformative programs, embodying #AdaptiveNation. Here, individuals, families, and groups of all ages and abilities can participate in adaptive recreation, adventure, and educational initiatives designed for inclusion. Activities include camps, alpine skiing, adaptive horseback riding, rafting, and guided adventures for individuals with and without disabilities!

PAAC

The PAAC offers a free app that we encourage all individuals aged 16 and over living with Duchenne muscular dystrophy or Becker muscular dystrophy to join. This application features informational channels, social groups, and additional resources. Explore this link for more: https://www.parentprojectmd.org/paacchats. The PAAC community consists of 24 adults living with DMD/BMD who are ready to offer support anytime as we collectively face this journey.

PJ Nicholoff Steroid Protocol

Introduced in 2015, this protocol outlines critical steps for stress dosing of steroids required for conditions like fat embolism, ARDS, long bone fractures, and more when a patient is in a hospital setting. This valuable resource is utilized often by physicians in various languages.

RAREis Scholarship

Initiated in 2020, the #RAREis Scholarship Fund aims to support young adults with rare diseases in pursuing educational aspirations. Thanks to the ongoing backing of the #RAREis program by Amgen Therapeutics, The EveryLife Foundation is excited to announce another round of the #RAREis Scholarship Fund, specifically for the rare disease community. Visit www.rarescholarship.org for more details. The scholarship is available to those over 17, U.S. residents diagnosed with any rare disease, including those yet undiagnosed who wish to apply. Applicants must plan to enroll either full-time or part-time in accredited educational programs.

Rare Lessons Project

The Rare Lessons initiative, led by Sarepta, focuses on incorporating rare disease education into K-12 classrooms. We believe that understanding rare diseases is essential for fostering awareness, diversity, and inclusion within educational settings, laying a foundational element for students’ overall educational experiences. Rare Lessons contribute to expanding education and awareness about rare diseases and recognizing individuals affected by them.

Route 79 Scholarship

Route 79, The Duchenne Scholarship Program, is designed to assist students diagnosed with Duchenne muscular dystrophy in reaching their educational goals post-high school. Named after the 79 exons in the dystrophin gene impacted by Duchenne, this program acknowledges the distinct paths individuals with Duchenne take while encouraging their academic aspirations. For the 2024-2025 academic year, twenty scholarships will be awarded to individuals living with DMD and five to their siblings! Apply by May 13, 2024!

Veyo

Introducing Veyo, the next generation of patient transportation management for non-emergency medical needs. Over the past decade, technology has significantly evolved ground transportation, integrating cloud solutions, Big Data, GPS tracking, and mobile applications. This new model enhances efficiencies and service quality for patients with chronic conditions, including those affected by Duchenne muscular dystrophy. With Veyo, healthcare organizations now have access to a modern transportation solution that promotes quality and transparency while reducing complexities. Services range from eligibility verification to trip dispatching and management, ensuring a seamless experience for patients.

World Duchenne Awareness Day - Every Year on September 7th

This platform offers numerous resources that can be shared in observance of World Duchenne Awareness Day, taking place annually on September 7th!