Welcome to That Mom With CP-a space created to celebrate and support mothers with cerebral palsy through shared stories, adaptive parenting tips, and honest conversations about self-care and disability.
For as long as I can remember, I dreamed of being a mama and for equally as long, I just couldn’t comprehend the dream coming true, for me. Yet, I had NO frame of reference or role models for mamas with CP.
Discover how living with cerebral palsy has made me a more patient, adaptable, and intentional mom—and why disability can be a strength, not a setback.
An honest, uplifting look at motherhood with CP — what I feared, what I learned, and how becoming a disabled mom became my greatest strength.
This research studied falls in ambulatory children and adults with CP specifically asking how often they’ve fallen, fall-related injuries experienced, circumstances around the fall, the level of fear or concern about future falls, and the extent to which they do or don’t avoid certain activities due to their concern about falling. This study sets a strong foundation for future fall research, quantifying the breadth and depth of the problem across a large spectrum of age and walking ability.
In 10% to 15% of cases, there is no clear cause of CP. There is increasing recognition that genetics plays a part, but no standardized approach to genetic testing in patients with CP exists. In this study we asked the question whether both people with and without known risk factors for CP should have genetic testing.
Jerron Herman, dancer, actor, trainer and more describes how he moves with spastic hemiplegia...and it might just surprise you!
Dr. Tom Novacheck, of Gillette Children's, describes the characteristics of the 4 types of unilateral, otherwise known as hemiplegic gait, and how the use of clinical instrumented gait analysis can help with treatment decision making.
Dr. Tom Novacheck, Gillette Children's, describes what to look for in each of the 4 different gait patterns seen for those with bilateral cerebral palsy and considerations for each type.
Dr. Debbie Song, Gillette Children's, gives an overview of common neurosurgical procedures to address global tone in individuals with cerebral palsy.
Understanding different gait patterns is important because it can determine what interventions will potentially be the most effective.
Living with CP taught Dr. Kathleen Friel much about educating others about her disability and now about her life threatening diagnosis of Metastatic Breast Cancer.
In this 2022 episode of "Let's Talk CP" host Jen Lyman talks with neurosurgeon, Dr. Debbie Song, and physiatrist, Dr. Marcie Ward about their role in the care of Cerebral Palsy at Gillette Children's.
CPF Executive Director Rachel Byrne and Dr. Paulo Selber discuss the ins and outs of gait analysis for cerebral palsy.
In this new 2022 episode of "Let's Talk CP" host Cynthia Frisina talks with Dr. Tom Novacheck and Dr. Andrew Georgiadis from Gillette Children's about gait, gait analysis, and what makes Gillette Children's such a special place.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
The purpose of this study is to explore the breast cancer screening experiences of women with CP with the aim of identifying factors that could improve screening rates for women with disabilities.
Breast cancer is a major cause of mortality in women. Screening has been known to improve early detection for early treatment. Women with disabilities face many physical and attitudinal barriers to mammogram screenings. This webinar has been created to address the educational needs of technologists and to give women with cp and disabilities visual accurate information about the procedure.
It’s SMART to think about what you might want to discuss at your next doctor’s appointment. Here are some suggestions
Cohort-based whole exome and whole genome sequencing and copy number variant (CNV) studies have identified genetic etiologies for a sizable proportion of patients with cerebral palsy (CP). These findings indicate that genetic mutations collectively comprise an important cause of CP.
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.
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.
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.
