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A Resource Guide to Understanding Cerebral Palsy- Commentary on Collaboration to Support Health Literacy and Shared Decision Making
Understanding and managing healthcare and the healthcare system can be daunting for all of us. Attitudes of both providers and patients toward healthcare have experienced significant changes over the past few decades, shifting away from a focus on providers addressing problems as they arise, to more of a partnership and a shared decision-making process to maximize function, well-being, and reduce potential morbidities [1].
Collage of individuals and families with cerebral palsy wearing green t-shirts that say go green for CP
Little Wins
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.
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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
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
Episode 3: Cerebral Palsy Health. Amy Bailes, PhD, PT, PCS: ABC's of CP
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.
Photo of Amy Bailes in a black shirt on a black background
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 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.
Let’s Talk CP. We’re In This Together
Welcome! The Cerebral Palsy Foundation is connecting the Cerebral Palsy community one podcast at a time with “Let’s Talk CP” - the new podcast series bringing you education, conversation, support and much more on a variety of topics. Join Jason Benetti, White Sox and ESPN sports announcer, and friends, as we get real with families, clinicians and researchers asking the questions you want to know about your CP journey. We’re all in this together.
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Will the “Post-Pandemic” Workplace Be More Inclusive of Employees with Disabilities?
As cities and states across the countries are lifting the COVID-19 lockdown orders, people are returning to work at their offices. However, since the virus is still very much going around, employers must be vigilant about keeping their workplaces as safe as possible. Although we might be seeing a sense of “normalcy,” there’s still a long way to go before reaching the pre-pandemic normalcy—if we
Sarah Kim sitting at a desk doing work. Text is article title Will the “Post-Pandemic” Workplace Be More Inclusive of Employees with Disabilities?
What Companies and Schools Should Learn About Disability Accommodations from the COVID-19 Outbreak
As the COVID-19 outbreak continues to sweep through the country, there are increasing orders from local governments for residents to stay at home, unless they’re essential workers. Both professionals and students are relying on Zoom and other video conferencing software to work or learn from the comforts of their home, although such measures, in most cases, were not permitted before the pandemic.
"Learning from Disability Accommodations for COVID-19" written in text next to an image of writer, Sarah Kim