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Episode 7. Let's Talk CP. Cracking the Cerebral Palsy Genetic Code Part 2 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 2 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
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Episode 5: Cerebral Palsy Health. Wendy Pierce, MD: What Does a Physiatrist Do Anyway?
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.
Photo of Wendy Pierce wearing a dark tan sweater on a light tan background
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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.
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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
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Episode 1. Introduction of "Let’s Talk CP". What Questions Should You Be Asking Your Child’s Clinician?
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Wendy Sullivan has long blonde hair is smiling and wearing a white suit jacket, Cynthia Frisina has long brown hair and is smiling, wearing a black top and Jen Lyman has long, curly brown hair and is smiling wearing an olive green top.
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Finding Your Passion
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
A screenshot from the YouTube video, "Finding your Passion"
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The Complexity of Acceptance
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
Representation of a person in a wheelchair using assistive technology to communicate with a group of people around them.
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Accessibility Features
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
An image of a smart phone and tablet on a blue background
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Navigating CP and Depression at the Same Time
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
"Navigating CP and Depression at the Same Time" is shown in text above an illustration of a person in a wheelchair colored in blue
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