Illinois Honors Parent Project Muscular Dystrophy’s 20th Annual Connect Conference; Designates Week of June 23 as Duchenne Muscular Dystrophy Awareness Week
Leading Duchenne-specific Organization Marks Anniversary with Largest International Meeting to Date
HACKENSACK, N.J., June 23, 2014 /PRNewswire-USNewswire/ – Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne) will hold their 20(th) Annual Connect Conference in Chicago, Illinois, June 26-29, 2014. The State of Illinois will recognize the event by declaring the week of June 23 as Duchenne Muscular Dystrophy Awareness Week. With over 500 families and Duchenne experts expected to attend from around the world, this will be the largest Annual Connect Conference for PPMD to date.
Illinois House Representative Darlene J. Senger of the 41st District will be presenting House Resolution #1112 which designates June 23-29, 2014 as Duchenne Muscular Dystrophy Awareness week in the State of Illinois. Ms. Senger, who is running for U.S. House of Representatives in November, will be presenting the Proclamation on Friday, June 27 at the Connect Conference.
PPMD Founding President and CEO, Pat Furlong, was thrilled to hear about the Proclamation: “We carefully pick the city for our Annual Connect Conference and really wanted to find some place, not only convenient for our families, but special for our 20(th) meeting. Chicago is a favorite destination of our families and Illinois has always supported the fight to end Duchenne with great advocates and supporters in government. To have our families and this Conference recognized with a Proclamation that will help raise awareness across the whole state is beyond incredible. We are so appreciative and in particular want to thank Representative Senger for her leadership and compassion.”
PPMD was founded 20 years ago by Ms. Furlong and a group of parents and grandparents united in their passion to end Duchenne. Ms. Furlong recounts, “We found that if we gathered other parents, relatives, friends, as well as people with Duchenne, we had a collective strength. We had to educate physicians, researchers, government agencies, Congress – even the man on the street. We had to raise awareness. And no one person could do that alone. Parent Project Muscular Dystrophy was born out of the idea that strength happens together. That collective strength is what has brought us to this moment today. A moment where we have a pipeline of therapies that once approved will be the first treatments for Duchenne. A moment where we can work collaboratively with regulatory agencies like the FDA to try to bring these potential therapies to the patients quickly and effectively. A moment where Congressional leaders recognize the importance of Duchenne research and show their support through legislation like the MD-CARE Act. In our first 20 years, PPMD and the Duchenne community had to change the landscape, architect a plan, shift the mindset. These next 20 years, we will continue to convene leaders in the field and families affected by this disease to build the infrastructure that we believe will lead us to the day we end Duchenne.”
To learn more about PPMD’s 20(th) Annual Connect Conference, visit PPMD’s website.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. 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 young men 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 boys with Duchenne live longer, stronger lives. We will not rest until every young man 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.
SOURCE Parent Project Muscular Dystrophy