Ann Lucas's Blog (8)

Understanding Clinical Trials in Duchenne

Hope is critical to survival. Hope helps us get through those times of darkness with the thought that there is something new on the horizon, a potential new destination. Hope enables us to focus on meeting challenges even in the midst of adversity. Hope allows us to see that there might be another path to achieve our goal and it allows us to look for…


Added by Ann Lucas on August 7, 2017 at 2:00pm — No Comments

DuchenneConnect Expands Down Under!

Last year advocates from Save Our Sons Duchenne Foundation (SOS) approached PPMD about partnering to have a patient report registry in Australia. They were worried because at the time there were no clinical trials in Australia. This needed to change.

They knew…


Added by Ann Lucas on June 5, 2017 at 9:30am — No Comments

New Research & Clinical Trial Tools on PPMD's DuchenneConnect!

We are excited to announce three new features now available on PPMD's DuchenneConnect! These tools are meant to help you in your journey as you gather information around potential research studies and potential new exon skipping therapies.  …


Added by Ann Lucas on January 12, 2017 at 1:24pm — No Comments

DuchenneConnect Twitter Chat on Thursday, October 20 at 1PM EST

Join us for our first DuchenneConnect Twitter chat on Thursday, Oct 20, 2016 from 1-2:00 PM EST. We will be using the hashtag #DuchenneConnectTC.

Our first chat will cover the importance of PPMD's patient registry,…


Added by Ann Lucas on October 17, 2016 at 11:30am — No Comments

The Importance of Early Diagnosis: Improving the Lives of Carriers & Their Families

The global Duchenne community will come together on September 7 for World Duchenne Awareness Day. This year a theme was chosen that is not only critical to changing the diagnostic odyssey for people…


Added by Ann Lucas on September 1, 2016 at 1:30pm — No Comments

DuchenneConnect – More Than Clinical Trial Updates


Did you know that even if you are not interested in being in a clinical trial, DuchenneConnect is still a powerful tool that is useful for people with Duchenne and Becker? That’s right! DuchenneConnect is the largest, most robust patient report registry for Duchenne and Becker in the United…


Added by Ann Lucas on February 29, 2016 at 8:30am — 3 Comments

PPMD’s DuchenneConnect to Receive $1.4 Million Funding Award from PCORI

(pictured: DuchenneConnect's Family Advisors at PPMD's 2015 Connect Conference)

, led by PPMD, has been approved for a three year, $1.4 million funding award by PCORI…


Added by Ann Lucas on August 12, 2015 at 12:04pm — No Comments

Guest Blog from Margie Heger: Where was Duchenne Connect 20 years ago??

We recently asked the Family Advisors from the DuchenneConnect Registry to write a blog about things they think are important.  Here is Margie Heger's story:

I only wish Duchenne Connect was around 20 years ago when my son was diagnosed. Witnessing the recent exciting scientific breakthroughs that put our sons on the cusp of revolutionary treatment, warms my heart.


Newly diagnosed parents, I refer to them as parents because this disease affects the entire…


Added by Ann Lucas on February 20, 2015 at 2:21pm — 1 Comment

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