DuchenneConnect PCORnet Family Advisory Committee

  

 

About

Our Family Advisory Committee is a remarkable group of people who provide oversight and guidance for DuchenneConnect's projects in order to make sure we meet the needs of the community. We are so thankful to work with these wonderful people. Please take the time to read their personal stories about why they chose to be a Family Advisor.

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It is important that the community is involved in all parts of the research process; our Family Advisors serve as the primary link between the community and the researchers.

Click here to see how our advisors have been involved.

Meet our Advisors
Research Projects
     

 

  Meet Our Advisors
 
Adele AlanThumb Ben

Adele A.
Parent of son with Duchenne
Learn more about Adele here

Alan C.
Living with Duchenne
Learn more about Alan here
Find Alan on the Community Site

Ben D.
Living with Duchenne
Learn more about Ben here
Find Ben on the Community Site

BrianThumb Greg Jackie
Brian D.
Parent of son with Duchenne
Learn more about Brian here
Find Brian on the Community Site
Greg L.
Living with Duchenne
Learn more about Greg here
Find Greg on the Community Site
Jackie E.
Parent of son with Duchenne
Learn more about Jackie here

Margie Tayjus Tom
Margie H.
Parent of son with Duchenne
Learn more about Margie  here
Find
Margie on the Community Site
Tayjus S.
Living with Duchenne
Learn more about Tayjus here
Find Tayjus on the Community Site
Tom C.
Parent of son with Duchenne
Learn more about Tom here
Find 
Tom on the Community Site