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.
We studied how common pain was thought to be due to muscle spasticity in the legs or arms is in children/adolescents with CP.
Medicaid Waivers, Katie Beckett or TEFRA are all forms of benefits that an "waive" medicaid financial restrictions for parents of children who have a developmental disability acquired prior to the age of three. Kidswaivers.org has provided a comprehensive, interactive website of all available medicaid waiver programs by State across the US.
CPF Executive Director Rachel Byrne and Mary Gannotti, PhD, PT discuss pain across the lifespan in cerebral palsy.
Pain in people with cerebral palsy is very common, and probably not evaluated frequently enough.
A lot of people with cerebral palsy will experience pain over the course of their life. Through better assessment we can provide better interventions, which will lead to a better quality of life.
The Cerebral Palsy Foundation has created a factsheet to help guide you in understanding and treating pain with CP. This fact sheet has been created for individuals with cerebral palsy to provide basic guidance surrounding common causes and potential treatment of pain.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
Many people do not know the difference between SSI and SSDI. It can be very confusing for a family or individual to understand what is available, and whether they will qualify. Very often, the recipients and their families do not even know which benefits they are receiving. But it is important to understand some basic information about government benefits. This post will focus on the two most common government benefits and give you a brief overview of how they work.
Setting up a Third Party-Special Needs trust as part of estate planning is essential if the individual with a disability is or may be eligible for means-tested government benefits. A properly set up Third Party Trust ensures that the funds left to the individual, whether through gift or inheritance, are not considered countable assets when applying for means tested benefits
In 2014 the Achieving a Better Life Experience Act was passed. The ABLE account is a tax-advantaged savings account for individuals with disabilities. The individual with the disability is the account owner and anyone can contribute to the account – the account beneficiary, family, friends, even a Special Needs Trust.
A special needs trust is a written legal agreement that enables an individual with a disability to qualify or remain qualified for means tested government benefits, such as medicaid, SSI or even medicaid waivers.
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.
Students with disabilities often need extra support throughout the day to access their environment, the academic materials, and learn alongside their peers. A Personal Care Attendant in the school setting is often utilized to support the students needs.
Children and teens with cerebral palsy and other disabilities may need the assistance of an individual who has a background in healthcare and the skills to provide the services essential to quality care.
Personal Care Attendants for adults with cerebral palsy and other disabilities provide a variety of essential functions that ensure safety, health, wellbeing and overall impact quality of life.
An employment agreement spells out the rules, rights and responsibilities for both the Personal Care Attendant (the employee) and the individual with cerebral palsy or family who is hiring the Personal Care Attendant.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
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.
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.
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.
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.
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.