NORD Hosts "Portraits of Courage Celebration"


It all started three years ago when we met with our Congressman to tell him about two special constituents in his district who have Spinal Muscular Atrophy and also to gain his support for the National Pediatric Research Network Act (NPRNA) - legislation created and championed by Fight SMA. Since then the NPRNA has passed Congress and has been signed into law by the President.

Chairman Fred Upton continues to push for accelerated cures in America by recently unveiling the 21st Century Cures initiative. The Energy and Commerce Committee released a video highlighting the merits of the program and cited the passage of the NPRNA as a model for Congress to use as it considers ways to support medical research in the future. The video can be found at

National Organization for Rare Disorders to Honor Two Members of Congress, Patient Advocates and Orphan Product Innovators

NORD to Present Awards at “Portraits of Courage” Celebration on May 8th in Washington, DC

This Thursday,May 8, the National Organization for Rare Disorders, Inc. (NORD) will be honoring OUR FAMILY and other rare disease patient advocates, Representative Fred Upton and Representative Sherrod Brown and companies that have brought novel new therapies to patients at the “Portraits of Courage Celebration” at the National Building Museum in Washington, DC.

Our family will be one of the families featured in their “Portraits of Courage” gallery detailing our journey with Spinal Muscular Atrophy.

“Approximately 500 people attend each year, representing a cross-section of the rare disease community – medical clinicians and researchers, patients and patient advocates, and individuals from government, academia and the pharmaceutical industry.”

I will have the opportunity to speak at the event about our life with SMA and Brielle and Brooke will have the huge honor of presenting the NORD award to Representative Upton on behalf of everyone in the rare disease community.

I can’t even describe how PROUD I am to do this and to feel like I am making a difference in the SMA disease.