May 13, 2015
Meet the Two Little Michigan Girls Who Helped Inspire a Big Initiative in Congress
“This is what hope looks like. We should all have their courage to believe in a brighter future, and their fortitude to fight for it every single day. 21st Century Cures looks at disease through the eyes of those who believe it can be beat. Let’s prove them right."
-Chairman Fred Upton (R-MI)
Chairman Fred Upton with the Kennedy girls
“I can and I will.” This is the motto of two brave little angels in Mattawan, Michigan, who are battling Spinal Muscular Atrophy (SMA), a rare disease that destroys the nerves controlling voluntary muscle movement. Their names are Brooke and Brielle Kennedy and they are an inspiration for Chairman Upton’s bipartisan 21st Century Cures initiative.
Brooke and Brielle were both diagnosed with Spinal Muscular Atrophy Type II shortly after their births. Their whole lives have been a constant battle with trial treatments and drugs, physical therapy, rehabilitation, and the many daily struggles SMA brings. But Brooke and Brielle have faced these challenges with bravery, optimism, and smiles.
The Kennedy girls’ bright smiles are infectious. Brooke’s sweet and loving nature alongside Brielle’s enthusiasm for life touches everyone around them. They have a presence that is indescribable. Their cheerfulness and determination compelled Chairman Upton to do all he could to help.
Brooke and Brielle, self-introduced as Cinderella and Sleeping Beauty, first met with Upton in 2011 and told him about their story battling SMA. With the help of their parents, Sarah and Eric, Upton gained a first hand look at the challenges facing families with loved ones suffering from rare diseases. Clinical trials take time and money, research funding is low, the approval process for treatments is slow and inefficient, and the rarity of these diseases means there are very few people to test potential cures. But mostly, there is a lot of frustration and not a lot of hope.
That’s where Brooke and Brielle come in. They were powerful voices that helped Upton and the Energy and Commerce Committee get the National Pediatric Research Network Act signed into law in November 2013 following a multi-year and multi-Congress effort. That was just the beginning.
Brooke and Brielle visit the U.S. Capitol in the summer of 2014
With the help of the Kennedys and many other patient advocates, researchers, and health care innovators, the 21st Century Cures initiative continues to bring hope to those dealing with the thousands of diseases without cures. For the past year, the committee has been gathering information on how Congress can speed up the approval process for treatments and cures, expand medical research, encourage innovation, and ultimately save more lives.
Brooke and Brielle draw the “key to the cure” for Chairman Upton following the April 30 hearing on the Cures discussion draft
Upton plans to have legislation to accelerate cures and treatments for diseases on the president’s desk by the end of this year. This legislation will have the potential to change not only Brooke and Brielle’s lives, but also the lives of many other patients and families across America. Brooke and Brielle may be little, but they have had a big impact in Congress and have inspired hope for so many.
As Chairman Upton said at the April 30 hearing on the Cures discussion draft, Brooke and Brielle “are two of the brightest stars I know. We have a chance to do something big, and this is our time. And it is Brooke and Brielle’s time.”
To learn more about Brooke and Brielle, click here.
To learn more about the 21st Century Cures effort, click here.
- See more at: http://energycommerce.house.gov/blog/inspiration