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Episode 5: Let's Talk CP. What is Genetic Counseling and How Can it Help Your Family?
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.
Danielle Lemke has long dark brown hair and is smiling. She is wearing a black blazer.
Episode 4. Let's Talk CP. Cracking the Cerebral Palsy Genetic Code Part 1 with Dr. Michael Kruer, Physician Scientist at Phoenix Children's Hospital
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.
Michael Kruer has short brown hair, he is smiling wearing a lab coat with a blue tie
Episode 3. Let’s Talk CP. Pediatric Orthopedic Surgeon Dr. Hank Chambers Shares Advice & More for Parents of Kids with Cerebral Palsy
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.
Photo of Dr. Hank Chambers wearing a black sport jacket and tie.
Episode 2. Let’s Talk CP. What Should You Expect at Your Child’s Medical Appointment with Dr. Lisa Thornton
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.
Photo of Dr. Lisa Thornton smiling at the camera wearing a red top
How to Get Quality Sleep with CP and/or Chronic Pain
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
Text: How to Get Quality Sleep with CP and/or Chronic Pain, black and white photo of a woman in a wheelchair looking out a window.
Risky Behavior
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.
Family holding a contract for safety
People with Disabilities Also Have Diverse Sexualities and Gender Identities
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.
"People with Disabilities Also Have Diverse Sexualities and Gender Identities" is written in text above a representation of different people, some using wheelchairs, some using crutches, some standing without assistance. The representations of people are all in different colors reminiscent of the pride flag