Who We Are

History

Early in 2007, a group of thought leaders in the Duchenne muscular dystrophy community began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with Duchenne or Becker, along with their families and caregivers, to connect them with medical research, clinical care, clinical trials, and each other. At the same time, it would also be a resource for researchers and industries with an interest in Duchenne, allowing access to aggregate, de-identified data provided by patients and their families - information that could prove vital to advances in care and treatment. This resource, a breakthrough multidirectional information portal for Duchenne and Becker muscular dystrophy, would help connect these stakeholders, while providing them with resources never before available in one place. Today, the result of this endeavor is DuchenneConnect, a robust and cutting-edge registry and resource.

Founding Organizers and Partners

Created by Parent Project Muscular Dystrophy (PPMD), the founding organizers of DuchenneConnect came from leaders in government agencies (Centers for Disease Control and Prevention; NIH - Office of Rare Diseases, Collaboration, Education & Test Translation Program; National Center for Biotechnology Information), IT development (AltaVoice/Invitae) and academic institutions (Emory University, Department of Human Genetics).
 
Since 2011, DuchenneConnect has been funded entirely by PPMD, and PPMD is the sole guardian of DuchenneConnect and its material. PPMD is deeply committed to the registry to ensure that it is serving the needs of the entire Duchenne and Becker community.
 
In 2017, DuchenneConnect Australia was launched in partnership with Save Our Sons Duchenne Foundation. This addition to the DuchenneConnect family gives the Australian Duchenne and Becker community their first patient led registry and a local portal into the resources of DuchenneConnect.

DuchenneConnect Operations Team

Parent Project Muscular Dystrophy

        • Pat Furlong, Founding President & CEO
        • Kimberly Galberaith, Chief Operating Officer
        • Ann Martin, MS, CGC, Co-Director of DuchenneConnect
        • Ann Lucas, MS, CGC, Co-Director of DuchenneConnect and PCORnet Co-PI
        • Jennifer Ely, MS, CGC, Decode Duchenne Program Manager
        • Kathi Kinnett, MSN, CNP, Sr VP of Clinical Care
        • Matthew Walsh, DuchenneConnect Assistant Curator
        • Elizabeth Habeeb-Louks, PCORnet Program Manager

Save Our Sons Duchenne Foundation

        • Kristina Elvidge, PhD, Co-Director of DuchenneConnect Australia
        • Klair Bayley, RN, Co-Director of DuchenneConnect Australia

RTI International

        • Holly Peay, PhD, CGC, PCORnet Co-PI

AltaVoice / Invitae

        • Kyle Brown, CEO
        • Jud Rhode, CTO

 

The operations team behind this incredible resource continues to refine and perfect the site so that it evolves to best serve the needs of the entire community. We are open to your suggestions and feedback. Please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. or 888-520-8675.

About Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
 
We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
 
Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube.

About Save Our Sons Duchenne Foundation

Save Our Sons' mission is to help find a cure for Duchenne by funding research into new treatments, support children and their families living with Duchenne, and raise awareness of their plight.
 
Clinical trials and preclinical studies in Australia, UK, USA & Canada currently receive research funding from Save Our Sons. Funding programs to improve the quality of life for those in all stages of Duchenne is also a priority. They help families afford equipment such as coughing and breathing machines, swim and mobility scooters and stand-up wheelchairs to give back what Duchenne has taken away.
 
Furthermore, Save Our Sons distributes new diagnosis packs to help families understand Duchenne upon diagnosis, as well as teacher resource packs to help teachers support those with Duchenne in the school environment.
 
A comprehensive and effective national patient registry for Duchenne is also a key mission of Save Our Sons, in addition to funding Duchenne-trained nurses in every state of Australia to help children with Duchenne and their families.
 
For more information about Save Our Sons Duchenne Foundation, visit www.saveoursons.org.au.