
Neurocrine Biosciences is the exclusive sponsor of our MyCP Fitness program with Staying Driven.
The Cerebral Palsy Research Network announced that
Neurocrine Biosciences, a pharmaceutical manufacturer based in Southern California, will be sponsoring the network’s
MyCP Fitness Program hosted by Staying Driven. The CP Research Network
launched its MyCP Fitness program in June 2021 to enable members of the
MyCP community to have access to quality adaptive fitness from the safety and comfort of their own home. The network chose adaptive fitness coach Steph “the Hammer” Roach and her crew of adaptive fitness trainers to provide these free services to our community. The Neurocrine sponsorship enables us to continue the program through 2022.
While physical activity is important for everyone’s health, it has been shown to be even more important for people with disabilities like CP who are at greater risk for cardiometabolic disease.
[ref] The challenge is that most gyms or virtual fitness programs don’t have appropriate
accommodations or adaptations for people with CP.
Staying Driven, founded by Steph Roach, a former CrossFit trainer who has CP, focuses on fitness for people with disabilities. Our program was an attractive fit for Neurocrine which has a philosophy is to holistically support and be good partners to the patient community they hope to serve.
The Neurocrine Biosciences sponsorship not only extends the length of the program, but enables the CP Research Network to reach more community members. Teens and adults with CP who are interested in participating in the MyCP Fitness program can
sign up for free on our Cerebral Palsy Fitness page.
CP Research Network Hires Scientific Director
/in Cerebral Palsy Registry, CPRN Studies, Latest, Research/by PaulKristie Bjornson, PT, PhD, MS, has been hired by the CP Research Network to be the Scientific Director.
The Cerebral Palsy Research Network hired Kristie Bjornson, PT, PhD, MS to lead its scientific direction. Dr. Bjornson, featured in our CP Stories in April 2021, is a leader in the field of research for cerebral palsy. In her new role, Dr. Bjornson will lead the network’s effort to pursue public funding from granting agencies such as the National Institutes of Health, the Patient-Centered Outcomes Research Institute and the National Institute on Disability Independent Living and Rehabilitation Research. Dr. Bjornson brings multi-center clinical trial experience for various interventions for CP (i.e. surgery, injections, orthoses, and rehabilitation).
“I’m excited to merge my experience in clinical research in cerebral palsy with the power of the network,” said Dr. Bjornson. “There are so many important to questions to answer for our community and the network is a highly efficient way to conduct this research.”
In addition to her role as Scientific Director, Dr. Bjornson will continue as a site principal investigator for Seattle Children’s Hospital (SCH) where her first-hand experience with our registry will be invaluable to our future research endeavors as she has real world experience with how the registry can be used to make clinical research more effective. Under her leadership, SCH has become a significant contributor to the richness of data in the network’s cerebral palsy registry as SCH has enrolled its entire CP population. Understanding and leveraging the registry to plan new research studies is a great strength that Dr. Bjornson brings to the network.
CP Awareness Month Begins!
/in Adults, Children and Families, CP Daily Living, Latest, News/by PaulCome back every day to vote for YOUR favorite pictures.
Join the Cerebral Palsy (CP) Research Network in our activities to celebrate National CP Awareness month. This recognized month is a great opportunity for us to create awareness about living with CP for the general public to help fund research, support disability policies, and to promote inclusion. There is so much you can do to help the community:
Please help us in our efforts to spread awareness for cerebral palsy!
Webinar on Wellness for Adults with CP
/in Adults, CP Daily Living, Education, Latest, Wellbeing/by Paul“We are excited to share the details of our MENTOR program with members of the CP community,” said Dr. Rimmer. “Past participants recruited by the CP Research Network have helped us shape our wellness program for the CP community.”
Community members interested in learning more about MENTOR can register for the webinar on the MyCP Webinar Series page. If you are interested and cannot attend, you can register to receive an email notification when the webinar is completed and the recording is posted. Please join us.
If you already know about MENTOR and want to sign up, join MyCP or visit your profile and select “sign up for MENTOR”. You will receive an email with an invitation to the program.
Free Mindfulness, Exercise, and Nutrition Course
/in Adults, Education, Latest, News, Wellbeing/by PaulOne of the core curriculum of MENTOR is nutrition which is of greater importance for people with cerebral palsy for their daily and long term health.
The MENTOR program is held over eight weeks for one hour a day. Classes meet virtually and have instructors from different disciplines to teach mindfulness, nutritional health and adaptive exercise. Some exercise equipment is provided free of charge. The classes offer optional add-on private coaching to tailor the content for the individual participating. The next class for people with CP will begin in April.
An informational webinar is being planned for February 23 at 4 pm ET with NCHPAD chief executive Dr. James Rimmer and past participants from the CP community. Adults with CP that are interested in learning more should visit our Cerebral Palsy Fitness page or send an email to mentor@cprn.org. Go to our MyCP webinar series page to sign up for the informational webinar.
Cerebral Palsy Awareness Photo Contest
/in Adults, Children and Families, CP Daily Living, Latest, News/by Paul“We find that the CP community is underrepresented in so many forms of media today,” said Paul Gross, President and CEO of the CP Research Network. “As an example, stock photography agencies have very limited authentic photographs of the lived experience for people with CP.” The CP Awareness Photo Contest seeks to develop a rich set of authentic photos of people with CP that can be used in the CP Research Network’s growing cerebral palsy awareness campaigns for March and beyond!
The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member Prizes will be awarded as follows:
Winners will be chosen via a combination of votes and final selection by the CP Research Network. Contestants must sign a photo release as part of the entry process. Photos will be displayed on CPRN.ORG and CP Research Network social media channels. Detailed rules for entries can be found on the photo contest rules page. Dig through your archives or snap a new picture and submit it soon!
Webinar: Intrathecal Baclofen Pump Complications
/in Latest, Adults, Children and Families, CPRN Studies, Education, Quality Improvement/by PaulDr. Robert Bollo will present on the CP Research Network’s efforts to reduce the most common complication with intrathecal baclofen pumps.
Our next MyCP webinar is Thursday, January 27, at 8 PM ET and will be about our efforts to improve outcomes for intrathecal baclofen pumps (ITB). ITB pumps are commonly used to treat spasticity in people with cerebral palsy. Our featured speaker will be Robert Bollo, MD, a pediatric neurosurgeon from the University of Utah. The webinar and open Q&A with Dr. Bollo will last one hour.
Dr. Bollo will present an overview of the use of ITB pumps in the management of spasticity and common post-surgical complications with ITB pumps. He is leading a quality improvement (QI) initiative (study to improve outcomes) in the CP Research Network to monitor the most common complication of baclofen pumps – post surgical infections. ITB pump infections are common but estimates of infection rates in the literature vary widely with an average of 10%[refs] of all implantations.
Interested participants need to register in advance. Members of the MyCP webinar series will be emailed a link for this webinar. It is free and open to the public. It will also be recorded for future viewing.
References
Pure Grit: An interview with the authors
/in Adults, CP Daily Living, Latest/by PaulIla Eckhoff, is a managing director at Blackrock Associates and is featured in Pure Grit.
The Cerebral Palsy Research Network will kick off its 2022 MyCP webinar series with an interview of the authors of Pure Grit, a book full of stories about remarkable people with physical disabilities doing extraordinary things. The webinar is free and open to the public next Tuesday, January 11 at 8 pm ET. Ila Eckhoff, an accomplished financial services sector leader and one of the featured people in the book, will also join the conversation with authors Lily Collison and Kara Buckley.
The interview will include how the authors sought to develop the book, chose their subjects, and what they hoped the book would achieve. The one hour webinar will include 40 minutes of interview followed by open Q&A with the attendees.
Please join us for the interview. If you are not already registered for the MyCP Webinar Series, you can sign up here. A free Zoom account is required to sign into the webinar. We look forward to seeing you there. If you cannot make it, the interview will be recorded and posted on our YouTube channel within 24 hours.
Happy New Year from the CP Research Network
/in News, Adults, CP Daily Living, Education, Latest, Quality Improvement, Research, Research CP, Wellbeing/by PaulAt the Cerebral Palsy Research Network, we have a lot to be thankful for. You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022. With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow). Thank you to all who contributed and helped to spread the word!
2021 in Review
Last year was transformative in numerous ways for the CP Research Network. We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:
Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now. A few highlights include:
What’s new for 2022?
We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.
There are lots of ways to stay engaged with us.
Please consider one of these:
All the best to you and the entire CP community for 2022!
Neurocrine Biosciences Sponsors Cerebral Palsy Fitness
/in Adults, Children and Families, CP Daily Living, Latest, Wellbeing/by PaulNeurocrine Biosciences is the exclusive sponsor of our MyCP Fitness program with Staying Driven.
While physical activity is important for everyone’s health, it has been shown to be even more important for people with disabilities like CP who are at greater risk for cardiometabolic disease.[ref] The challenge is that most gyms or virtual fitness programs don’t have appropriate accommodations or adaptations for people with CP. Staying Driven, founded by Steph Roach, a former CrossFit trainer who has CP, focuses on fitness for people with disabilities. Our program was an attractive fit for Neurocrine which has a philosophy is to holistically support and be good partners to the patient community they hope to serve.
The Neurocrine Biosciences sponsorship not only extends the length of the program, but enables the CP Research Network to reach more community members. Teens and adults with CP who are interested in participating in the MyCP Fitness program can sign up for free on our Cerebral Palsy Fitness page.
Update on Dystonia in Cerebral Palsy
/in CPRN Studies, Latest, Quality Improvement, Research, Research CP/by PaulOn Thursday, December 9, at 8 pm ET, the CP Research Network will hold its final MyCP webinar for 2021 to provide an update on our work in dystonia in cerebral palsy. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist at St. Louis Children’s Hospital, and a leader in the network, will present an update on our progress in this important area of research and care.
In 2019, the Cerebral Palsy (CP) Research Network started an effort to build a community centered research agenda for dystonia in CP. Dr. Darcy Fehlings had found that dystonia was significantly under diagnosed in the CP population and that as much as 80% of the people with CP had some degree of dystonia in addition to spasticity.[ref] The presence of dystonia can be challenging and painful for people and often requires different approaches to treatment. Parents expressed frustration in getting an accurate diagnosis that allowed their children get relief from these symptoms. The CP Research Network developed Research CP Dystonia Edition to engage the extended community – caregivers, people with CP, and clinicians – in a dialogue about the most pressing issues needing research in dystonia in CP.
Dr. Aravamuthan leads our quality improvement effort focused on increasing practitioner awareness of dystonia screening for every person with CP. She will describe how this effort addresses a key priority set forth in Research CP Dystonia Edition. She will also describe research concepts that she is developing to directly engage the community to advance dystonia diagnosis. Please join us for the webinar next Thursday evening by signing up at https://cprn.org/mycp-webinar-series/.