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.