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Certified Duchenne Care Centers
PPMD’s Certified Duchenne Care Center Program helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines. All Certified Duchenne Care Centers have met the requirements for, and agree to provide, optimal standardized care and services.
CureDuchenne Cares is an interactive education and outreach program where patients, families and healthcare professionals can get information, resources and training to help improve patients’ lives. Hosting over 20 events across the country, CureDuchenne Cares is free for families and caregivers. Offering both Workshops and Sessions, CureDuchenne Cares addresses a variety of topics to help patients, families and caregivers navigate the Duchenne journey. Free and open to everyone in the Duchenne community, CureDuchenne Cares covers a variety of topics, empowering, supporting and improving connections in the Duchenne community.
Decode Duchenne: Genetic Testing & Counseling
PPMD's Decode Duchenne program provides free genetic testing and counseling to people with Duchenne or Becker muscular dystrophy who otherwise could not afford genetic testing. The application and testing process is fast and easy, and includes interpretation of results and counseling.
A source of knowledge, hope, and sharing created for the Duchenne community.
Over the past several decades, perhaps the greatest advances in the fight to end Duchenne have been in care for people living with Duchenne and Becker. Although there is not yet a cure for Duchenne or Becker, there are accepted recommended treatments and therapies that can help people with Duchenne live longer, healthier lives. The link above is a resource provided by PPMD.
A safe, secure, and dedicated platform of collaborative resources to support everyone affected by Duchenne. This is a place where individuals diagnosed with Duchenne, families, health care providers, researchers, and treatment innovators can all come together to engage, explore, and learn.
If you have Duchenne or Becker muscular dystrophy or if you are a female carrier of Duchenne or Becker, join The Duchenne Registry and your data will help fuel the fight to end Duchenne. We share your anonymous Registry data with researchers to speed the development of new therapies.
"Embrace This Moment" Webinar Series
This CureDuchenne Cares educational series hopes to fill the unknown with knowledge and support so we can embrace this reality and re-envision our future. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne to help improve overall quality of life.
Best description straight from a fellow mom who has a son attending college and is also living with Duchenne:
Are you looking for a caregiver/personal care assistant for a loved one? For all of my Duchenne friends and families looking for help, I can't recommend Handshake enough. It is a job listing service that is connected to colleges and universities....all student applicants.
I'm filling positions for my son's PCAs for this school year at Michigan State and this has been amazing. At first glance, it seems like you have to be a big company filling job or internship openings, but you ABSOLUTELY can be an individual looking for individual caregivers. It's all students and recent graduates who can apply.
Your son who needs PCAs does not have to be attending college - you can choose a college or university in your area to recruit from, choose the major(s) you'd like the applicants to have, and request resumes and cover letters. Handshake gives you a list of matches for your criteria.
We have more PCAs than we need this year - pre-med, nursing and kinesiology majors with lots of experience!
When you go to the Handshake website, click "for employers". Company name can be first and last name of your son. Website or something similar is required. I used my son's Instagram and Handshake accepted that.
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)"
Jake, a young man with Duchenne, has authored his first children's book. One day when Jake was four, he came downstairs and said “Dad, I have an idea for a book and it’s called One Wants to be a Letter. He began to talk about the number 1 whose friends were all letters and he felt different and wanted to be like them. His family talked about the ideas that eventually became this book. Many of the words came from Jake’s Dad, but the idea and story came from the creative mind of a four-year old. We are so happy to bring this project to fruition. To pre-order your copy go to www.4jakessake.com.
The PAAC has a free app that we would like ALL individuals ages 16 and over living with DMD/BMD to join. There are informational channels, social groups, and more. Learn more here: https://www.parentprojectmd.org/paacchats The PAAC is made up of 24 adults living with DMD/BMD and we are here to talk with you anytime about anything! We are all on the same road together in our fight with this disease. Life will be sweeter if we all work together and share our experiences.
Established in 2015, this protocol instructs the necessary steps to take when stress dosing of steroids is needed for fat embolism, ARDS, long bone fractures and more if the patient is hospitalized and in a possible critical condition. The protocol is available in several languages and referred to by physicians on a regular basis.
The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Amgen Therapeutics, The EveryLife Foundation is pleased to announce another year of the #RAREis Scholarship Fund, a scholarship dedicated to the rare disease community. www.rarescholarship.org The #RAREis Scholarship is available to applicants who are: Over the age of 17 Residents of the United States Diagnosed by a physician as having any form of rare disease regardless of treatment status. Undiagnosed patients are also encouraged to apply. Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall semester. There is no minimum amount of credit hours to be part-time.
Rare Lessons is a Sarepta-led program intended to promote the development and implementation of rare disease lessons in the K-12 classroom. We believe that rare disease education is an important component of disease awareness and diversity and inclusion within the classroom setting and that the study of rare diseases sets the foundation for enhanced education throughout students’ academic lives. Rare Lessons is a small contribution to ensuring broad education and awareness of rare diseases and the acknowledgement of individuals affected by them.
Route 79, The Duchenne Scholarship Program, is a program designed to help students diagnosed with Duchenne muscular dystrophy pursue their post-high school educational goals. The scholarship is named after the 79 exons in the dystrophin gene impacted by Duchenne. Sarepta knows that the route traveled by every person with Duchenne is distinct and therefore, through this program, we acknowledge and support individuals with Duchenne who are taking charge and mapping out their future via educational pursuits. For the 2024-2025 academic year, twenty scholarships will be awarded to individuals living with DMD and five will be awarded to siblings! Apply by May 13, 2024 for the 2024-2025 academic year!
The next generation of Patient Transportation! Non-emergency medical transportation management. In the last ten years, technology has radically transformed ground transportation for the better. Cloud technologies, Big Data, GPS-tracking and mobile apps have been connected to a virtual, scalable, and cost-effective fleet of drivers and their vehicles. This new model of transportation allows for tracking, insights, efficiencies, and increased levels of service like never before possible. Each year, 3.6 million Americans miss or delay medical care due to transportation issues. Issues that stem from an overly complex and difficult-to-manage process that has not changed in decades. Quality of service in the non emergency medical transportation (NEMT) field is plagued by inadequate technology, outdated business models, inconsistent and unprofessional medical transportation providers, and virtually non-existent transparency for the health plan or customer. At Veyo, we envisioned a better system—one where smart logistics would be an ally to healthcare organizations. A revolutionary business model, built on new technology, with innovation and real-time analytics at its core. Veyo provides a full array of non-emergency medical transportation management services to our customers. Services include, but are not limited to:
Veyo has reinvented the patient transportation model from the ground up. Through a combination of data-driven technology, GPS tools, and Veyo’s proprietary Virtual Fleet™ Model, we deliver dramatically higher levels of reliability, quality, and transparency to customers, partners, and members than ever seen before in the non emergency medical transportation industry. Veyo is the result of the combination of 2pointb, a transportation and logistics technology company, with the healthcare logistics and transportation division of Total Transit, a company with a 20-year track record of delivering a differentiated solution for provider partnership, call center technology, and high performance.
World Duchenne Awareness Day - Every Year on September 7th
This website contains many resources to use and share for World Duchenne Awareness Day which happens every year on September 7th!
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