March is National Cerebral Palsy Month in the United States and is an opportunity to highlight the history of cerebral palsy advocacy - where we’ve been, where we are currently, and the opportunities that are ahead.
Cynthia Frisina discusses the purpose and importance of Cerebral Palsy Awareness Month and Day to bring people together to advocate for better healthcare, research advancements, funding and more those with CP and their families.
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.
People with disabilities represent more than 27% of the United States adult population, making them the single largest minority group in the country. This new NIH designation, new research program and update to NIH mission are actions to ensure inclusion of people with disabilities.
Jerron Herman, dancer, actor, trainer and more describes how he moves with spastic hemiplegia...and it might just surprise you!
The bipartisan, Cerebral Palsy Research Act, is introduced by Congressman Steve Cohen of Tennessee. Read more here:
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.
The 2023 Appropriations Act has passed and thanks to advocacy by the cerebral palsy community, it includes the strongest language and funding yet for cerebral palsy!
Understanding different gait patterns is important because it can determine what interventions will potentially be the most effective.
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.
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.
On Thursday, March 24th, 2022, the Cerebral Palsy Foundation hosted the first ever Cerebral Palsy Congressional Briefing with a panel of physicians, patient and self advocates.
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.
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.
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.
A person’s gait is dependent on the interaction between the nervous, musculoskeletal, and cardiorespiratory systems and has many influences.
Learn about Ava's journey with gait analysis and surgery at Gillette Children's.
It's really hard just to watch someone walk to decide what's wrong with them. A better way is to do what's called Three Dimensional Gait Analysis, and that's where the child comes into one of our labs. Here, we put markers on their face, hands, and legs. We have a computer and a bunch of cameras all around the room. And then we're able to break down the gait into three dimensions.
