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!
Our educational series continued with a panel of experts from Nationwide Children's Hospital on Monday, March 29th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Our educational series continued with a panel of experts from Scottish Rite for Children and the University of Texas Southwestern Medical Center on Thursday, March 25th, 2021. This virtual event featured a multi-disciplinary panel discussion.
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.
Wonder what it's like to grow up as Michael Kutcher? On this episode of "Let's Talk CP" Michael Kutcher and host Cynthia Frisina dive deep into Michael's childhood and journey to adulthood - including the good, the not so good and the very surprising. You won't want to miss what Michael has to say in this very candid and intimate conversation.
If you're interested in learning more about what is involved with genetic testing and how a visit with a genetic counselor might be helpful, join Cynthia Frisina, the host of Let's Talk CP, as she dives deep with licensed genetic counselor, Danielle Lemke and they talk about what genetic counseling really is, how it can help and what it might be used for as it relates to potential genetic causes of cerebral palsy.
Can there be a genetic cause of Cerebral Palsy in some cases? Let's Talk CP host, Cynthia Frisina talks with Dr. Michael Kruer about this topic and his ground-breaking research in Part 1 of a two-part discussion about the possible genetic causes of CP. When Michael Kruer was in medical school, he knew he wanted to work with children. With advancements in gene therapy opening up incredible opportunities in neuroscience, he realized he could be a part of something much bigger than himself and give children affected by movement disorders like cerebral palsy hope that didn’t seem possible just a few years ago.
There are multiple factors that impact bone health, including birth weight, nutrition, medications for seizures and/or reflux, genetics, and physical activity. Targeted exercise to improve bone health in childhood can be sustained into adulthood, and childhood is the best time to promote bone health.
There are many kinds of physical activities that people with cerebral palsy can participate in – for both ambulatory people as well those who use various mobility devices. Knowing just what activities are right for whom can be tough, this article helps to sort that out.
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.
A person’s gait is dependent on the interaction between the nervous, musculoskeletal, and cardiorespiratory systems and has many influences.
Learn about Ava's journey with gait analysis and surgery at Gillette Children's.
Cerebral palsy may lead to a number of bone, joint and muscle problems that effect walking (gait) and mobility. Spasticity or contractures of muscles can cause the knees to flex at the hip knee and ankle which can cause difficulty or increased energy requirement of walking. Internal rotation of the thigh bone, external rotation of the lower legs, and severe flat feet combine to limit the "push-off" ability to move forward, making walking slow. When the muscles are too strong on one side and too weak on the other side, the muscle imbalance can result in gait abnormalities or dysfunction
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.
The second Virtual Town Hall featured the experts from Rady Children's Hospital, Southern Family CP Center, and UC San Diego School of Medicine in San Diego, California. This multi-disciplinary panel discussion highlights the latest updates in care of children with CerebralPalsy.
Our educational series kicked off with a panel of experts from the Weinberg Family CP Center at Columbia University Irving Medical Center in New York City on Thursday, November 5th, 2020 at 6:30pm ET. This virtual event featured a multi-disciplinary panel discussion with Weinberg Family CP Center clinicians and researchers.
An empowering and evidence-based guide for living a full life with spastic diplegia–bilateral cerebral palsy.
Compatible with the FFORA Attachment (an attachment that affixes to the tubing of manual wheelchairs) behold the New FFORA Bottle Holder & FFORA Bottle, allowing you to carry your H2O or favorite beverage in style!
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.
The RAD RaceRunner is a three-wheeled running bike with chest support. It is designed for children and adults with balance or mobility challenges to achieve their exercising goals -be it recreation, competition, or rehabilitation.