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.
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.
An empowering and evidence-based guide for living a full life with spastic diplegia–bilateral cerebral palsy.
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."
Wondering what to expect if your child has an appointment with a pediatric orthopedic surgeon? Still confused about the different types and levels of cerebral palsy? Dr. Hank Chambers, who is also the father of an adult son with CP, talks about different considerations for different ages and stages of a child with cerebral palsy.
Preparing yourself and your child well for medical appointments means a better experience for everyone. Our “Let’s Talk CP” podcast series continues Cerebral Palsy Foundation host, Cynthia Frisina talking with Physiatrist Dr. Lisa Thornton about cerebral palsy, spasticity and what to expect at many kinds of medical appointments. Questions include what to expect when procedures like botulinum toxin injections are recommended, how to talk with a clinician when “little ears” are listening, and much more. This episode is made possible with the support of Ipsen Biopharmaceuticals.
I suppose there has to be one silver lining that comes out of being sheltered in place for months on end (due to Covid-19): I’ve finally been catching up on sleep. The recommended nightly hours of sleep is between 7 and 9 hours . For me, getting a good night’s sleep has been the best way to regain a sense of control and ease during such unnerving times. Not only does sleep improve mood and
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.
Cerebral palsy refers to a group of conditions that are caused by problems in brain development and that affect how movement and motor control happen in children. Problems with walking and talking are often the way people start a conversation about cerebral palsy.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
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.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
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.