Measuring Progress. Building Consensus. Leading the Fight to End Duchenne
Monday, February 14th, 2010 Washington, DC
As a member of the Duchenne Muscular Dystrophy community, we need your input and help as we examine the federal government's focus on Duchenne to ensure a unified voice across all activities. Please join us for the Duchenne "One Voice Summit" on February 14th, 2011 in Washington, DC to help inform the decision making process to form consensus on the Duchenne community agenda and priorities.
Ten years ago, Congress passed the landmark Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act. With the possible exception of the discovery of the gene that causes Duchenne, no single action has done more to accelerate efforts to develop treatments and a cure for this disease. A decade later, the Duchenne community has made progress, but much work remains, and we cannot and will not rest until our goal is reached.
Then: Ten years ago, boys with Duchenne were considered fortunate to live until age 20.
Now: Today, the average life expectancy has been increased by at least 9 years. The fight must continue to give our children a full and healthy life.
Then: Federal funding and attention to Duchenne and other muscular dystrophies was virtually nonexistent.
Now: Today, strong programs exist at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) for Duchenne. We must fight even harder to ensure programs remain effective and that every taxpayer penny is spent wisely.
Then: No standards of care for any muscular dystrophy existed a decade ago.
Now: Today, these guidelines exist for Duchenne and most other muscular dystrophy conditions. These must be continually updated, expanded and enhanced.
On February 14, 2011, the Duchenne community will convene to reflect on our progress and to build a shared plan to accelerate progress toward treatments and ultimately a cure for Duchenne. None of the gains of the past decade would have happened without the deep commitment of all Duchenne stakeholders – patients, families, friends, researchers, industry, and government officials. We need to strengthen this shared effort.
The "One Voice Advocacy Summit" provides an unprecedented opportunity for discussion with stakeholders and key thought leaders on pressing issues that impact the lives of boys with Duchenne and for direct engagement with policy makers and Congressional staff to demonstrate the importance of continued Duchenne research funding. We hope you will join us for this important step forward. The "One Voice Advocacy Summit" will be a unique opportunity to share perspectives on what has worked and what we must do to achieve our goal of ending Duchenne.
Come and advocate for Duchenne directly with Members of Congress.
To register or learn more information, visit our website: PPMD's Annual Advocacy Conference