We rely on assistive technology for everything from holding utensils better to using a complex communication device. Makers Making Change is helping to create both custom and affordable assistive tech for all abilities and needs.
LittleWins harnesses the power of community to empower people with disabilities with the tools they need to thrive! From buying, selling, and donating medical equipment and supplies, to obtaining needed information and connecting with others – LittleWins is the one-stop community resource for families, parents, caregivers, in-home nurses, and all people with disabilities.
Frame Running is becoming increasingly popular as a recreational and competitive sport for individuals with cerebral palsy across all GMFCS levels. Tune in to learn more!
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
On this episode I talk with two of the world’s leading researchers… Dr. Madison Paton and Dr. Iona Novak on stem cell treatment for cerebral palsy. Stem Cells have been a hot topic in Cerebral Palsy for at least 15 years now, with many parents and researchers hoping that at the least, stem cells will lessen the impact of CP and at most hold the key to a cure. Dr. Paton and Dr. Novak will share their insider knowledge into this subject and help us sort through the hype and so we can hold onto our hope.
On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP’s physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis and family-centered shared decision making.
In this episode, Mary Gannotti, PhD, PT, discusses fitness, health and function across the lifespan for individuals with cerebral palsy.
In this first episode, listeners will meet the host, Jen, learn about her background, her son, Bower, and the reason for creating this podcast. Enjoy!
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
Our 3rd Virtual Town Hall featured experts from the Shirley Ryan Ability Lab and Northwestern University in Chicago. This multi-disciplinary panel discussion highlights the latest updates in care of children with #CerebralPalsy.
As a mother and a pediatrician, I’ve both felt the strain of pandemic parenting directly and indirectly. I’ve made decisions about my own family and sending our kids to daycare and school, and I’ve stayed up worrying about how parents are supposed to make these difficult choices with so little support.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."
This fact sheet is a sexual and reproductive health guideline for providers treating young women with cerebral palsy.
This podcast is a place for conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation. We will cover a range of topics including: treatments and therapies, nutrition, neuroplasticity, genetics, exercise and fitness, adaptive sports, accessibility, and new trends.
It is recommended that women start having mammography screenings starting at about the age of 40, and it becomes more difficult to obtain these services if you have a disability.
The findings of this article demonstrate the need for improved screening rates in women with CP, and highlight areas for improving their screening experience.
It’s SMART to think about what you might want to discuss at your next doctor’s appointment. Here are some suggestions
Spasticity is a condition of muscles that is a velocity resistance to stretch. What that means to a child and to a parent is that if you move the limb slowly, you have a difference than if you move that limb fast. Spasticity restricts movement and it creates a break on the system. It's as if they're trying to move, but they're held back. By treating spasticity, you may improve the range of motion or the action of the movement.