CPF Executive Director Rachel Byrne talks with Lily Collison and her son Tommy about their journey with Cerebral Palsy, Lily's new book, Tommy's work and much more.
CPF Executive Director Rachel Byrne and Peter Trojic, professional dancer with the Heidi Latski dance Company in New York City, discuss dance and disability.
CPF Executive Director Rachel Byrne and Jocelyn Cohen, Vice President of Communications and Engagement at Cerebral Palsy Alliance Research Foundation discuss collaboration in research.
CPF Executive Director Rachel Byrne and physical therapist, Jennifer Jezequel, PT, discuss exercise and fitness for children with Cerebral Palsy.
CPF Executive Director Rachel Byrne and Byron Lai, PhD, discuss exercise and fitness for individuals with Cerebral Palsy.
CPF Executive Director Rachel Byrne and speech therapist, Kristen Allison, PhD, CCC-SLP discuss communication and Cerebral Palsy.
CPF Executive Director Rachel Byrne and Peter Rosenbaum, MD, developmental pediatrician and CPF Scientific Advisory Council member discuss how current thinking about Cerebral Palsy has changed over time with advances in research.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
Vocational Rehabilitation (VR), operated by the Department of Education, can be utilized for their many tools to aid those with disabilities in the preparation for the job search, finding gainful employment, and maintaining this employment.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
A parent's perspective as she recalls the moment she realized that a wheelchair meant freedom for her son and not a barrier to his progress.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Many children with cerebral palsy (CP) have difficulty controlling saliva. Drooling varies in severity and can be distressing for the children, families and caregivers. Chronic drooling is referred to as Sialorrhea and occurs as a result of limitations in a person’s ability to control and swallow oral secretions.
What do you do when you want to help your child but your local providers don't have the resources? You travel for treatment. In this personal story, Sophia's family describes their experiences traveling to Gillette Children's for treatment, including both neurosurgical and orthopedic surgeries.
Shelby Nurse discusses how pain has been part of the reality throughout her life. In this video Shelby talks about what strategies and pain management techniques have worked for her and how this have changed and different times.
Learn about Ava's journey with gait analysis and surgery at Gillette Children's.
As an undergraduate student in a major metropolitan city like NYC, the thought of finding a place to live after graduation was very daunting. I didn’t have many options for accessible dorms on campus, so I could only wonder how much more difficult it’d be to find a “real-life adult” apartment that I could afford as a 20-something-year-old. My apartment search began one year earlier than
The historic Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush — marking this month its 30th anniversary. The ADA was the country’s first-ever comprehensive civil rights law for people with disabilities, offering protection against discrimination and imposing accessibility requirements in workplaces and the public. The passage of this law was
As cities and states across the countries are lifting the COVID-19 lockdown orders, people are returning to work at their offices. However, since the virus is still very much going around, employers must be vigilant about keeping their workplaces as safe as possible. Although we might be seeing a sense of “normalcy,” there’s still a long way to go before reaching the pre-pandemic normalcy—if we
A year ago, I wrote in my Forbes column about the decades-long pattern of Pride Month celebrations excluding people with disabilities. The underlying reason why Pride events were (and still are) mostly inaccessible for people with disabilities, both in terms of physical spaces and social acceptance, is that mainstream media and public don’t see them having identities outside of their disabilities.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.