We are so proud of Brielle!
She received a SUPER CALL from the Principal for showing the life skills of responsibility and caring by always setting a wonderful example for others.
Her teacher wrote: Brielle is a kind and thoughtful friend to her classmates and teachers. Her warm smile and sweet ways certainly bless all who know her. I am so proud of you, keep up the wonderful job!"
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 http://bit.ly/about21stCC.
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.
Many of you have asked about T-shirts in the past and now we have a “Team Brooke and Brielle” shirt made up! We will be wearing them for the first time May 3rd for the Families of SMA Michigan Chapter Run, Walk and Roll event.
We are asking $20 for each shirt. Please be sure to include the size(s) you would like to order in the “add special instructions to seller” section. Men’s sizing only. Sizes Small - 2XL.
Shirts are Vapor brand, made with high-quality, 100% spun polyester to deliver the look and feel of cotton with the benefits of polyester, with superior sweat wicking.
Thank you for your support!!