
Jett Foundation Hosts Eighth Annual World Duchenne Awareness Day Events
Panel discussions, accessible and adaptation demonstrations, a luminaria ceremony, and more!
Welcome Packet
Been diagnosed or want to learn more?
Request a Packet
About Duchenne
Facts, Treatment, and Care
Read More
Duchenne News
The latest from our partners.
Read Now
Female Carriers
Resources, Care, and Programs
Community Ambassadors
Meet our Community Ambassadors
Clinical Trials
A quick look at investigational drug studies
Volunteer Opportunities
Ways to get involved and help raise funds and awareness for Duchenne.
Volunteer Today
Community Ambassadors
These ambassadors are Jett Foundation’s extra ears, eyes, and voice.
Toolkits
View our resources targeted toward volunteers.
Our Resources
Become a Partner
Learn about creating a partnership and joining our community.
Get Started
Resource Library
Read about our resources for Partners.
Resources for Partners
How To Help
Make a difference in the lives of those living with Duchenne.
Get Started Volunteering
Clinical Trials
A quick look at investigational drug studies.
Read More About Clinical Trials
Duchenne News
Stay up to date with the latest discoveries.
Read Now
Book: Dan And DMD
This book will help parents and guardians as they prepare to talk to their children about Duchenne.
Read Here
Our Insurance Flight Plan
Our Health Insurance Flight Plan breaks down options that may be available to you.
Request a Flight Plan
Resource Library
Read about our resources for Medical Professionals.
Resources for Medical Professionals
About Female Carriers
Facts and information about female carriers.
Learn More
Resources for Carriers
Tools and materials for female carriers.
Read More
Connect with our Specialist
Get support and …
Meet Trina
Carrier Conversations
Join a carrier support group session.
Upcoming Events
General Resources
Check out helpful tools and transition resources.
Find Resources
Transition Resources
GotTransition resources and tools.
Learn More
Camp Promise
Locations and information on how to apply.
Learn More
Community Webinars
Watch past recordings on care and resource topics.
Watch Now
February 29, 2024
We will be recognizing Rare Disease Day with a panel discussion highlighting members of our community who are living life to the fullest, fulfilling their dreams, and conquering goals.
We are excited to welcome back Kyle Bryant and Sean Baumstark from the Two Disabled Dudes podcast to facilitate our conversation on February 29, 2024. We hope you will join to learn from others about their rare disease experiences and more.
Registration for Jett Foundation’s Rare Disease Day event will be available soon. You can view a recording of last year’s event here.
Hosts of Two Disabled Dudes Podcast
Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities.
However, both dudes have completed several long-distance bike rides including “The World’s Toughest Bike Race” – Race Across America (RAAM). Their RAAM journey is the subject of an award-winning documentary called The Ataxian.
Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
Together Sean and Kyle host the podcast series, Two Disabled Dudes. Their guests include leaders in the Rare Disease community, Paralympic athletes, notable Psychologists and accomplished public speakers and authors. This podcast is about setting sights beyond the challenges in life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.
Details coming soon.
You may fill out the above Sponsorship Packet or email maura@jettfoundation.org for more information on becoming a sponsor.
Thank you for supporting Jett Foundation on Rare Disease Day! These tools and resources will help you spread the word in your local community about Rare Disease Day, Duchenne, and Jett Foundation. Below we have included shareable graphics and facts about rare diseases and Duchenne.
Click below to download and share rare disease and Duchenne statistic graphics as you drum up excitement and awareness for Rare Disease Day amongst your family, friends, and colleagues.
Sample social media post to pair with a graphic:
I am attending Jett Foundation’s 6th Annual Rare Disease event on February 28th at 1p.m. ET!
This year, Jett Foundation will be recognizing Rare Disease Day with a presentation and panel discussion focused on anxiety and mental health in Duchenne. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcast series, our panelist will share their experiences managing anxiety and thriving through the challenges it brings while facing a rare disease as an individual, family member, or professional.
Facebook Profile Frame
Change your Facebook profile photo in honor of Rare Disease Day! Use our Canva template to customize the frame with your personal photo.
How to use the template:
Rare Disease Day BINGO
How to play:
Duchenne (pronounced dü-shen) muscular dystrophy (DMD) is the most common fatal pediatric disorder. Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and ultimately, premature death. Children with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties. Duchenne has no cure.
300 million people worldwide are living with a rare disease.
Equity for people living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
Rare disease currently affect 5% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.
70% of genetic rare diseases start in childhood.
There are approximately 15,000 individuals living with Duchenne in the USA.
2,000 individuals and families impacted by Duchenne and other neuromuscular disorders turn to Jett Foundation annually for knowledge, support, and friendship through programs like Camp Promise, Jett Giving Fund, Educational Workshops and Webinars, Family Support Groups, and more.
52% of Camp Promise participants are ineligible to join other camp experiences due to age restrictions at other camps.
Accessible equipment, like accessible vehicles, are often not covered by health insurance, making critical items financially out of reach for many families.
Duchenne impacts the whole family. Parents, siblings, relatives, and friends often don’t get the support they need to navigate a diagnosis alongside their loved one.
Duchenne still has no cure. But, there is so much hope. Research and advocacy work have helped increase treatment options and show promising results.
Take a look at this year’s Rare Disease Day Discussion with Jett Foundation!
Panel discussions, accessible and adaptation demonstrations, a luminaria ceremony, and more!
Jett Foundation’s Thriving with Duchenne Rare Disease Day event focused on anxiety and mental health
On September 7, 2022, Jett Foundation hosted its seventh annual World Duchenne Awareness Day (WDAD) celebration to recognize those in the Duchenne community.
On February 28, 2022, Jett Foundation hosted a virtual event to celebrate Rare Disease Day 2022. This was Jett Foundation’s 5th annual Rare Disease Day, which welcomed speakers from the Duchenne and rare disease communities in a panel discussion themed “Thriving with Duchenne.”
For the past several years, Jett Foundation has hosted an annual World Duchenne Awareness Day (WDAD) event of celebration and remembrance in the Boston area, the epicenter for rare disease research. Once again we were able to take the opportunity to broaden our celebration beyond our traditional Boston area event and engage with our families and partners all across the country virtually.
Jett Foundation, Inc.
65 Cordage Park Circle
Suite 130 | Plymouth, MA 02360
781-585-5566 | info@jettfoundation.org
Sign up to receive our newsletter and updates.
Required fields are denoted with an asterisk (*)