Oct
17
to Oct 19
Filtering by: PPMD
Sep
7
1:00 AM01:00
DMD Awareness Day
Mitchell’s Journey continues to support PPMD in its mission to advocate, educate, and advance research for the DMD community. On this special day, please consider donating to this remarkable organization who tried to save our son and continues to fight for children all across the world.
Dec
4
9:00 PM21:00
Sep
7
11:00 PM23:00
Jun
30
10:00 AM10:00
Keynote at PPMD Conference
Chris will be giving a Keynote at the annual PPMD conference Saturday, June 30, 2018. More details to come.
Jun
28
to Jul 1
2018 PPMD Annual Connect Conference
The largest, most comprehensive annual, international conference focused entirely on Duchenne.
Each year nearly 500 families from around the world gather at our Connect Conference to learn the latest progress in the fight to end Duchenne. They also gather for support, strength, and camaraderie.
This is your opportunity to gain direct access to the people fighting everyday for children like yours and perhaps, most importantly, it is your opportunity to meet and reunite with families on a similar journey as you. There is incredible power and strength in connecting.
May
10
5:00 PM17:00
PPMD Board Meeting
It continues to be an honor to serve on the PPMD Board as I watch how responsibly they run their foundation and lead the charge toward medical advancement, and improve care for patients and families who cope with DMD.
Mar
3
9:00 AM09:00
PPMD Advocacy Conference / Board Meeting
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 16 years Duchenne Advocacy has resulted in...
- A full and promising Duchenne drug development pipeline with over 40 companies developing drugs for Duchenne.
- Over $500 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 for all those diagnosed with Duchenne, which has markedly improved the quality of life and extended lifespan.
We hope you can join us in DC. This year includes a meeting on Monday called the "Duchenne Patient-Focused Compass" meeting, with invited members of the FDA, and other federal agencies to hear directly from Duchenne patients and caregivers.
Basic Agenda
- Sunday, March 4th 3pm-7:30pm - Advocate training (Mayflower Hotel)
- Monday, March 5th, 10am-4pm - “The Duchenne Patient-Focused Compass”meeting (Mayflower Hotel)
- Tuesday, March 6th, 9am-5pm - Hill meetings - both House and Senate (Capitol Hill)
Dec
5
7:00 PM19:00
Oct
27
8:00 AM08:00
Sep
20
11:00 AM11:00
Sep
7
1:30 AM01:30
September 7th - Duchenne Awareness Day
Join us in spreading awareness of DMD and its fatal outcomes.
Aug
14
6:00 PM18:00
Jun
29
to Jul 2
2017 Annual Connect Conference
Parent Project Muscular Dystrophy's Annual Connect Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way for families affected by Duchenne to connect with each other. To build support networks. To realize no one is on their own in the fight to end Duchenne.
http://www.parentprojectmd.org/site/PageServer?pagename=Connect_conference
Annual Connect Conference
The largest, most comprehensive annual, international conference focused entirely on Duchenne.
Each year nearly 500 families from around the world gather at our Connect Conference to learn the latest progress in the fight to end Duchenne. They also gather for support, strength, and camaraderie.
This is your opportunity to gain direct access to the people fighting everyday for children like yours and perhaps, most importantly, it is your opportunity to meet and reunite with families on a similar journey as you. There is incredible power and strength in connecting.
Save the Date for the 2017 Connect Conference:
- When: June 29, 2017 to July 2, 2017
- Where: Chicago, IL
Feb
12
to Feb 15
PPMD Advocacy Conference In Washington DC
http://www.parentprojectmd.org/site/PageServer?pagename=Advocate
Feb
11
12:00 PM12:00
Serving On PPMD's Board
Last month I was asked to serve on PPMD's board in 2017. Having appreciated the role the played in trying to save Mitchell's life and the tremendous good they do to advance the battle against DMD, I was happy to say yes.
Our first board meeting is being held in Washington D.C.
Jun
26
to Jun 29
May
21
10:30 AM10:30
PPMD Conference In SLC
Today we attended part of a PPMD conference and delivered a $20,000 check to Parent Project Muscular Dystrophy. We are excited about the progress they're making on many fronts. Their leadership and vision is something we admire and want to support now and in the future.
Pat Furlong, the co-founder of PPMD is seen on the right. When she heard of little Mitch and his fight to survive heart failure as a result of DMD, she marshalled every resource she knew to try and save our son. We couldn't save our boy - so we will fight to save others.