Parent Project Muscular Dystrophy Marks Rare Disease Day with Multiple Awareness Events
HACKENSACK, N.J., Feb. 28, 2013 /PRNewswire-USNewswire/ — Parent Project Muscular Dystrophy (PPMD), the leading non-profit in the United States focused entirely on Duchenne muscular dystrophy (Duchenne), will mark the six year anniversary of Rare Disease Day today by participating in two important events that will raise awareness about Duchenne and share with audiences compelling stories from our community.
PPMD Founder, President, and CEO Pat Furlong will participate in the 3rd Annual Sanford Rare Disease Symposium in Sioux Falls, South Dakota. In commemoration of the 30 million Americans affected by nearly 7,000 rare diseases, Sanford Research will be hosting its symposium to increase public awareness of rare diseases and provide information to healthcare providers and researchers. Pat will share her Duchenne journey, as well as discuss the role PPMD continues to play in advancing research, advocating in Washington, and improving care.
PPMD’s Chief Operating Officer, Kimberly Galberaith will be simultaneously participating in a Rare Disease Day Town Hall Meeting hosted by Pfizer. Duchenne was one of only a couple of rare diseases focused on in this meeting, and PPMD is honored to be putting together a panel of families to tell their stories.
Says Ms. Galberaith, “The importance of Rare Disease Day continues to grow year after year. The most critical tool any rare disease has is awareness. When we are given the opportunity to share with audiences our stories and what our disease means to the families affected, it is our obligation to speak for the people living with these diseases. PPMD is honored to have been chosen by an important company like Pfizer to tell a few of our stories and introduce a few of our families. We know that we are speaking, not only on behalf of those living with Duchenne and other muscular dystrophies, but the nearly 7,000 other rare diseases. We take this responsibility very seriously and want to represent in this meeting that if someone you love is diagnosed with a rare disease, every day is Rare Disease Day.”
PPMD will also launch a new video and use its various social media outlets to share stories and raise awareness over the course of the day. While this is an ongoing and integral part of PPMD’s mission, Rare Disease Day does bring added focus to organizations like ours. As Rare Disease Day continues to grow and receive media coverage, all organizations dedicated to fighting rare disease, like PPMD, will benefit from a potential increase in federal and public support.
About Duchenne muscular dystrophy
Duchenne, the most common form of childhood muscular dystrophy, is a progressive and fatal muscle disorder affecting boys and young men that causes the loss of muscle function, wheelchair dependency and a decline in respiratory and cardiac function.
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.
About Rare Disease Day
February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 24 European countries.
On and around this day hundreds of patient organizations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders.”
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the U.S. and Canada, and as far as Australia and New Zealand.
SOURCE Parent Project Muscular Dystrophy