LET’S ALL KEEP MOVING FOR CEREBRAL PALSY
As a virtual event, STEPtember is a fun and safe way to boost health, happiness, and teamwork, wherever you choose to participate from. And with our new STEPtember trainers on board to help you achieve your fundraising and health goals, there’s never been a better time to step up!
Learn what motivates them, find what motivates you, and learn more about Cerebral Palsy Alliance Research Foundation’s incredible work. You make that work possible when you step up and you’re help changing what possible means for cerebral palsy.
THE FACES OF CP
There are 18 million people living in the world with cerebral palsy. That's 18 million stories to share with you.
Here are just a few...
Thomas Laughlin has been an enthusiastic team leader during STEPtember for the past three years through his job at Kirkland & Ellis, but for him and his wife, Caitlin, STEPtember has an even deeper meaning. Their daughter, Elizabeth, has cerebral palsy, and she has pushed past so many expectations that doctors placed on her. Thomas and Caitlin are motivated to raise as much as they can and move as much as they can all STEPtember long. They want everyone to know that every dollar makes a difference — and that discoveries made by cerebral palsy researchers can potentially help people with other disabilities, too.
Karen Baird is one of Nexstar's most energized STEPtember champions. Her stepson, Tyler, has cerebral palsy and he's her biggest motivation throughout STEPtember, and she loves the way the challenge brings people together and gets them moving for a cause that's so close to her heart. She sets her sights high and she hopes you will, too.
Naomi’s smile says it all, and because she’s nonverbal, she and her mom have a ton of inside jokes. So much is said without a word. Naomi's cerebral palsy affects her in a lot of ways, and therapy is critical for her continued development to strengthen her core muscles and her abilities. She has been getting physical therapy since she was six months old and occupational therapy since she was two years old. She's a ball of positivity and the definition of resilience — and the cerebral palsy research you're supporting could potentially help her say everything she's ever wanted to.
Solomon “Solly” Rodan is a smiling and loving 5 year-old who lights up any room he enters. He’s a goofball, he loves to be WILD, and he doesn’t know a stranger. Solly survived three massive strokes at birth, causing damage to over half of his brain.
When he turned one, he was diagnosed with triplegic cerebral palsy. Doctors painted a rather bleak picture of who Solly would become and what he would be able to do. In five short years, he has already blown away all expectations, something his family largely attributes to emerging treatments and technologies like Trexo Robotics.
Faces of CP - More Stories
Our Faces of CP campaign is an ongoing curation of photos and stories of people with cerebral palsy. From all over the United States and around the world. Our aim is to share as many stories as possible. Together, we’ll raise awareness and show the personal side of what it’s like to live with CP. Read them here.
Want to learn more about where your fundraising money goes?
Read more about Cerebral Palsy Alliance Research Foundation.
HOW WE’VE STEPPED UP
For over 15 years, we’ve been driving life-changing international cerebral palsy research.
Granted to CP Research
But our work is far from over. Raising funds for CP Research is more important than ever before. So, this year, we’ve recruited a team of STEPtember trainers to show you how to fundraise in creative and fun new ways.
WHAT WE DO
CPARF funds the brightest US researchers to discover what's possible for cerebral palsy.
We are the foremost organization in the world that solely focuses on CP research. CP is the most common childhood-onset physical disability in the world and it is one of the most underfunded. We will be the ones to change that. We will be the ones to find, fund, and support the researchers who will positively reshape what it’s like to live with CP.
TACKLING A CRUCIAL NEED IN THE US
In the US, CP research is currently trapped in a cycle of chronic underinvestment that stifles innovation. The National Institutes of Health (NIH) only allocates around $28 million to CP research annually, despite CP’s high prevalence and exceptionally high lifelong economic burden. One in 323 babies is diagnosed with CP each year, and related lifetime costs exceed $1.2 million per person, while less common disabilities with lower lifetime costs receive exponentially more NIH funds, leading to more research for them.
We were established in New York City in 2015 by Australia’s Cerebral Palsy Alliance (CPA). With their 75-year history as the global leader in CP care and treatment, and as the largest private funder of CP research in the world, CPA recognized an urgent need to create a research-based presence in the United States.
By founding the Cerebral Palsy Alliance Research Institute in 2005, CPA propelled CP research into the international spotlight. They supported several studies that revolutionized prenatal care, including using therapeutic cooling to counter brain injury in full-term babies in intensive care, and administering magnesium sulfate to any mother in extreme preterm labor, forming a potentially protective shield around their baby’s brain, which greatly lessened the severity of CP.
We proudly partner with researchers, institutes, and foundations around the globe to harness scientific expertise, aggregate global findings, incentivize progress, and access unparalleled insight in the CP research space. We take a strategic and thoughtful approach when choosing each study we fund. Our goal is always to amplify the science that is closest to making a breakthrough.
AN ALLIANCE LIKE NO OTHER
Our global presence makes us the ideal conduit to fund US-based researchers who are asking the unasked questions and discovering new solutions. We connect them with others in the field to expand collaboration and translation of their work, making it easier and faster to get information to the scientific community and to people with CP and their families.
Our information-sharing alliance ensures we’re best positioned to place your funds where they will fuel the most consequential change through research.
PROJECTS SUPPORTED BY STEPTEMBER
EARLY DETECTION & INTERVENTION
With CP, as with any brain injury, time matters — and there are so many babies who don’t get the care they need quickly enough due to their location or their circumstances.
The clock doesn’t start at birth — it starts in the womb — and the sooner we detect CP in a child, the sooner we can help them. Early interventions like physical, occupational, and speech therapy harness the brain’s high neuroplasticity — its ability to continuously change — during childhood.
CPARF funds studies that have the potential to lessen the severity of CP in the US and lessen the incidence of it altogether. By reaching children as early as possible, we maximize their physical potential and decrease the effect that CP may have on them. We make therapies more comfortable and less scary, and we may reduce the need for later therapies and traumatic surgeries. They can live the lives they envision for themselves, feeling included and independent.
Chronic pain is real, common, and complex for people with CP — and chronic pain is the least-researched aspect of this prevalent disability. CPARF is working with the world’s best scientists to change that.
CPARF is looking at the whole picture and asking important questions. Can we prevent chronic pain by addressing it in infancy? How does gender affect the way someone experiences pain and processes medication at a cellular level? How do we develop additional treatments that decrease spasticity, thus maintaining joint health and lessening two primary sources of pain for people with CP? How does chronic pain treatment affect someone with CP throughout their life? Does drug efficacy change as people age?
The answers we find will help us uncover effective chronic pain treatments for people of every age. Free of pain, people with CP will have more choices and more energy to follow their wants and needs. They can establish a career or start a new one that seemed unattainable before. They can earn the income they deserve and afford the housing that’s accessible to them. They can spend time with their friends and family. They can travel more easily. They’ll experience less physical and emotional stress. They can be in the moment and not worry about what the next one will feel like.
CPARF knows that technology can revolutionize CP diagnosis and treatment, and that it can change the way people with CP experience the world. Technology will also play a major role in preventing CP. We are committed to funding research that embraces these possibilities.
Movement affects how people experience the world — in every possible way. Mobility technology can make it possible to reduce therapies and surgeries, foster more independence, and improve quality of life.
Communication is key. It’s part of every interaction, central to every relationship, and included as a qualification on nearly every job listing. Technology will unlock communication for the people with CP who can’t use current technology. It will recognize their voice and include them in ways they’ve never experienced before.
People with CP have always had their own voice, but they’ve often had to forfeit privacy, endure awkwardness, and rely on others to say their words for them. Communication technology will amplify their ability to share their thoughts and imbue them with their own personality.
Technology will reshape what we know about CP and turn dreams into reality.
Irreversible. That’s how brain injuries like CP have been perceived for decades. But CPARF recognizes that now is the time to challenge and change perceptions about brain repair. Regenerative medicine research does that by investigating ways that different types of tissues and cells encourage growth to help reorganize brain function, optimize brain function, or restore lost brain function.
Regenerative medicine represents a host of undiscovered possibilities for CP. Can we reverse the damage from a stroke in infancy? Can we reverse the damage that occurs when a baby stops breathing for too long? Can we coax the brain to heal itself? Will we be able to apply these advances to people of all ages, changing lives in ways we never thought we could?
If we can, it will open up a world of possibilities and choices for people with CP and their families.
There may be at least partial genetic circumstances surrounding as many as 30% of CP cases.
Since CP is such a diverse condition, presenting in innumerable different ways with co-occurring conditions, the genomic challenge is great. CPARF and the researchers we support are up to the challenge.
At its core, genomics harnesses what is already inside of someone to answer intrinsic questions and improve their lives. Since people with CP experience it in such specific, personal ways, genomics is ideally positioned to change the way we treat them. Once it reaches its potential, we may be able to help someone optimize each aspect of their treatment — find a pain medication that works without undesired side effects, discover a physical therapy technique that works in concert with a drug, uncover ways to lessen exhaustion, and find a technology that works for someone’s exact type of CP.
The potential positive implications are endless, and there’s so much more to learn and do.
We support the US-based research in these key areas that is the most promising — the studies that are likely to effect the broadest change, the science that’s positioned to make the deepest impact, and the researchers who are closest to achieving their goals.
We have given out grants totaling $37.5 million to date and robust private funding will help us attract the brightest researchers and advance promising science to the critical clinical trial stage.
CP was once thought of as unchangeable. We’re changing the way people think.
IN 2020, WE RAISED IN THE US AND ACROSS THE GLOBE
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