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Duchenne Community Events – March 2020

Duchenne Community Events – March 2020
Duchenne Community Events – March 2020
Josh Argall
Community Manager

Duchenne Community Events – March 2020

We put together a list of events taking place throughout the worldwide Duchenne community. It includes a variety of activities designed for patients, caregivers, family members, and professionals. 

Action Duchenne Science on Tour

Thursday, March 5 – Luton, U.K.
Friday, March 6 – Birmingham, U.K.
Saturday, March 7 – Stoke on Trent, U.K.
Organized by Action Duchenne

Come to the Action Duchenne Science on Tour FREE event. Why? We know that keeping up with the research news can be challenging in Duchenne. We also know that lots of news stories and press releases use language that’s much more complicated than it could be! What? To help families understand the research and clinical trials process we’ve launched a series of ‘Duchenne science on tour’ events. Unlike science lessons in schools, these sessions will be informal and interactive – with lots of opportunities to ask questions. We’ll be using real science demonstrations and experiments to talk about some of the challenges facing researchers in Duchenne and how researchers can overcome those challenges. Research Q&A There will be time set aside for a research Q&A session where we will answer all your questions about Duchenne research including gene editing, gene therapy and exon skipping.  Learn More

CureDuchenne Cares Session – Knoxville

Saturday, March 7
Knoxville, TN
Organized by CureDuchenne

Join us for a casual two-hour dinner on Saturday evening to talk about your family’s story, health and wellness, coping and overall disease management. We will be joined by a guest speaker to guide our conversations and provide support on mental health for the whole family while navigating a Duchenne diagnosis. Come break bread with your not so “rare” neighbors. Dinner is free of charge.  Learn More

Jett Foundation Family Workshop – Philadelphia

Saturday, March 7
Philadelphia, PA
Organized by Jett Foundation

Ready. Set. Jett. Family Workshops are our national educational program that brings together clinicians, researchers, and families affected by Duchenne to learn about care, crucial information, and resources in many cities each year. Through this program, we empower patients and families with the knowledge needed to be their own best advocates, spread awareness about Duchenne in the medical field, and help accelerate research and development. During these workshops, you’ll hear from Duchenne clinicians, pharmaceutical companies in the Duchenne space, and local experts present on topics like clinical trials, standard of care, physical therapy, adaptive sports and much more. You’ll also learn about helpful resources and our direct service programs like Camp Promise, Jetting For Success, JettRide. Join us for a day filled with information about Duchenne, Jett Foundation, and how to be involved in our community. Free child care is available.  Learn More

PPMD’s 2020 Advocacy Conference

Sunday, March 8 – Tuesday, March 10
Washington D.C.
Organized by PPMD

Come and advocate for Duchenne directly with Members of Congress. Our annual Advocacy Conference continues to yield results for the Duchenne community. Over the last 19 years Duchenne Advocacy has resulted in… Over $600 million in funding for Duchenne related programs at the National Institutes of Health, Center for Disease Control, and Department of Defense. A standard of care established and recently updated for all those diagnosed with Duchenne, which has markedly improved the quality of life and extended lifespan. An ever-growing Duchenne drug development pipeline with over 30 companies developing drugs for Duchenne. We hope you can join us in DC.  Learn More

Duchenne ACTT Conference

Sunday March 8 – Monday, March 9
Parkville, Victoria Australia
Organized by Save Our Sons

ACTT Conference is Save Our Sons Duchenne Foundation third two day conference, and is aimed at the families and those living with Duchenne, and the wider community including clinicians, nurses and allied health, alongside researchers, industry and those involved in the regulatory process for new treatments. With both national and international speakers we will cover many topics including: A : Advocacy C : Clinical Care T : Trials T : Therapies  Learn More

CureDuchenne Biobank – Phoenix

Saturday, March 14
Phoenix, AZ
Organized by CureDuchenne

We are pleased to announce that the CureDuchenne Biobank is scheduled to collect samples in Phoenix, AZ. We have partnered with RUCDR Infinite Biologics and Dr. Tahseen Mozaffar from UC Irvine, to create the CureDuchenne Biobank which will collect minimally invasive blood and skin tissue samples from patients and their siblings that will be banked and made openly accessible for research. These high quality, standardized samples will help provide researchers access to data to accelerate the work necessary to find a cure for every child with Duchenne. Without these quality samples taken, it is difficult to conduct research for scientists at academic institutions, biotechnology and pharmaceutical companies. We hope to ensure that all patients, regardless of mutation, have their own cell lines available to test potential mutation-specific therapies.  Learn More

CureDuchenne Cares Workshop – Phoenix

Saturday, March 14
Phoenix, AZ
Organized by CureDuchenne

Join us for insightful presentations on: Standards of Care Up-to-date care and disease management guidelines across relevant medical disciplines. Research and clinical trials Updated reports on clinical trials and drug development pipelines for Duchenne muscular dystrophy. Opportunity to speak with representatives from pharmaceutical and biotech companies. Mental health and family support Open conversation on navigating Duchenne through all aspects of life. Guidance on communicating with those around you regarding the diagnosis. Physical Therapy and medical equipment Stretching techniques and instruction by a CureDuchenne Certified Physical Therapist®. Information on equipment and insurance from a local Durable Medical Equipment vendor.  Learn More

Duchenne Parent and Caregiver Information Day

Saturday, March 14
London, U.K.
Organized by Duchenne UK

These days focus on giving parents and caregivers updates on DMD research, clinical trials and the new Standards of Care for DMD, to make sure you have the most up to date information on caring for your child. Our information days are for parents and caregivers to get updates on DMD research, clinical trials and care considerations for DMD, to make sure you have the most up to date information on caring for your child. There will also be lots of opportunity to meet other parents.  Learn More

PPMD’s 2020 End Duchenne Tour: Atlanta, GA

Saturday, March 14
Atlanta, GA
Organized by PPMD

In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD has launched a multi-year community experience called the End Duchenne Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the End Duchenne Tour brings updates on research, advocacy, and care to cities across the country.  Learn More

11th Annual Jammin’ For Joseph

Thursday, March 19
Detroit, MI
Organized by Team Joseph

A concert benefiting Team Joseph in their mission to defeat Duchenne muscular dystrophy. Featuring the Grammy nominated and multi-platinum Eli Young Band with special guest Gone West.

  • Main Floor General Admission: $25
  • Main Floor Reserved: $35
  • Mezzanine: $49.50
  • VIP: $150 Includes strolling dinner and Meet & Greet with the bands before the show!

All music lovers are welcome to attend this all-ages event. Email jamminforjoseph@gmail.com to purchase tickets. No ticket fees apply!  Learn More

2020 MDA Clinical and Scientific Conference

Saturday, March 21 – Wednesday, March 25
Orlando, FL
Organized by MDA

Be with us as we recognize seven decades of commitment to NMD research and clinical development. Help us realize our vision of transforming care through innovation. Don’t miss out on what will be not only the defining event in NMD this year but also one of your biggest opportunities to stand with MDA and stand out in your field.  Learn More

CureDuchenne Cares Session – Billings

Saturday, March 21
Billings, MT
Organized by CureDuchenne

Join us for a casual two-hour dinner on Saturday evening to talk about your family’s story, health and wellness, coping and overall disease management. We will be joined by a guest speaker to guide our conversations and provide support on mental health for the whole family while navigating a Duchenne diagnosis. Come break bread with your not so “rare” neighbors. Dinner is free of charge.  Learn More

Run Wigan Festival

Sunday, March 22
Wigan, U.K.
Organized by Joining Jack

The Run Wigan Festival, now in its fourth year, offers a variety of distances for all types of runners, with a half marathon, 10 mile, 5k and Family Mile races. The event will see around 4,000 runners of all abilities take to the streets of Wigan to take part in their chosen race. All registration fees will go directly to Joining Jack and help us in our battle against Duchenne.  Learn More

Webinar – Learning and Behavior in Duchenne Muscular Dystrophy

Tuesday, March 24
Online
Organized by Action Duchenne

We are excited to announce that we are bringing you the chance to hear highly respected friend of the Duchenne community, and Duchenne Dad James Poysky, PHD in an exclusive webinar. Dr Poysky is an internationally recognized expert on Duchenne and is a regular presenter at the Action Duchenne International Conference, hosting his hugely popular and insightful, ‘Learning problems and neurobehavioral disorders in Duchenne’.  Learn More

CureDuchenne Cares Session – Boston

Saturday, March 28
Boston, MA
Organized by CureDuchenne

Join us for a casual two-hour dinner on Saturday evening to talk about your family’s story, health and wellness, coping and overall disease management. We will be joined by a guest speaker to guide our conversations and provide support on mental health for the whole family while navigating a Duchenne diagnosis. Come break bread with your not so “rare” neighbors. Dinner is free of charge.  Learn More

Melbourne Gala Dinner 2020

Saturday, March 28
Melbourne, Victoria Australia
Organized by Save Our Sons

Save Our Sons Gala Dinner – Enchanted Garden is a very special evening to raise funds and awareness for Duchenne muscular dystrophy.  Learn More

TimeCross 6

Saturday, March 28
Val-Morin, Quebec, Canada
Organized by La Force

What better way to enjoy winter than to practice your favorite outdoor activities, while challenging yourself in a friendly competition whose profits go directly to a good cause? The DMD Force for Duchenne Muscular Dystrophy, in collaboration with Mont Belle-Neige, invites you to participate in a friendly “Boardercross” competition on March 28, 2020, starting at 9 am. The competition is open to everyone: adults and children, snowboarders and skiers. You are all welcome! We are waiting for you with awards and magnificent door prizes.  Learn More