CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!
A screen capture of the CP Research Network’s website as it displays on a mobile device
The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will be the subject of our next MyCP Webinar on May 26 at 8 pm ET.
Founders Paul Gross and Michele Shusterman will provide background information on the creation of merged site, talk about the design principles and walk attendees through the new user experience, including plans for future enhancements to MyCP.
In January we announced the merger of CP NOW, including its toolkit, wellbeing resources and CP Daily Living blog, with CPRN and its MyCP community engagement site. Carefully sorting how to organize our four web properties was a key step to bringing together CP NOW and the CP Research Network. The new website, found at https://cprn.org, focuses on the four cornerstones of our mission:
Engaging the community in research and sharing their lived experiences;
Research and implementation of evidence-based health care for cerebral palsy;
Educating community members of all ages with content reviewed by experts in CP care;
Wellbeing programs for optimizing life-long health.
During this webinar we will demonstrate how to get the most value out of the network and MyCP, including how you can contribute to improving outcomes for people with CP.
https://cprn.org/wp-content/uploads/2021/05/New-CPRN-Website.jpg425790Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-05-21 05:42:432022-01-21 13:22:19A Labor of Love: Our New Website
Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference.
Marc Randolph, cofounder and original CEO of Netflix
The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders.
Participants, including clinicians from the National Institutes of Health, discussed a range of network studies, including the relevance of genetics in cerebral palsy diagnosis, and brainstormed potential new areas in dystonia research and building capacity to care for adults with CP.
The meeting also enabled the CPRN team to define goals for an updated 2021-2025 strategic plan, including expanding leadership systems, ensuring financial sustainability, engaging community members, and strengthening research and quality improvement projects.
“This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.”
Moving to a virtual format proved to be a successful venture with the format and progress of CPRN’s 2021 conference receiving praise from the attendees.
“It was great,” wrote Dr. Ed Hurvitz, chair of Physical Medicine and Rehabilitation at the University of Michigan. “The best Zoom meeting of the year for content, for career development, and being able to connect a bit with friends old and new.”
Paralympian, advocate, and community advisor Duncan Wyeth, also in attendance, remarked: “I have acquired more knowledge and insight over two half-days about my disability and potential system mechanisms to address that disability than at any other time in my life. This meeting gives me great hope and expectations for the countless individuals who will know an enhanced quality of life because of this learning network.”
Thank you to everyone who gave their time for this important conference. It has set us on an excellent trajectory for 2021 and beyond. We greatly appreciate the commitment of our dedicated investigator team and all their hard work advancing the care of people with CP.
https://cprn.org/wp-content/uploads/2021/05/CPRN-Annual-Investigators-Mtg.jpg11492560Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-05-11 13:22:342021-06-04 11:49:34Annual Conference Sparks Innovation and New Research Ideas
Kristen Allison, Ph.D., a speech pathologist and researcher at Northeastern University, will present “Speech and Language Predictors of Participation in Children with CP,” research made possible through the CP Research Network’s community registry hosted at MyCP.org.
Allison’s research stems from parent surveys sharing the speech and language capability of children with CP and insights about their interactions with peers and common communication breakdowns due to speech and language impairments.
Pediatric movement disordersneurologist Bhooma Aravamuthan, MD, DPhil, was also able to collate data through MyCP.org. She will present her findings on community attitudes toward a CP diagnosis and how a complete explanation of causes of CP can benefit those with the condition and their families.
A third presentation, powered by efforts within the network, will be led by Amanda Whitaker, MD, an orthopedic surgeon who has been examining practice variation in hip surveillance at centers in the CP Research Network. Her findings are already shaping quality improvement protocols as part of the network’s drive to become a learning health network.
AACPDM’s 75th annual meeting with take place on October 6 to 9, 2021, at Quebec City Convention Centre in Quebec, Canada.
The CP Research Network remains committed to enabling clinicians to conduct research that advances the care of people with CP via our community registry and learning health network.
https://cprn.org/wp-content/uploads/2021/04/CPRN-Investigator-Header.jpg393796Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-04-15 05:30:002021-06-04 11:49:57CPRN Investigators To Detail Important Findings
Next Tuesday, April 20, at 8 pm ET, the Cerebral Palsy Research Network will be hosting a MyCP webinar about how innovative technology is advancing CP research. Dr. Jacob Kean, Associate Professor in Health System Innovation and Research at the University of Utah, will be presenting how we can transform healthcare for CP by harnessing information from your lived experiences.
Dr. Kean will explain how our partnership with Datavant is opening doors to breakthroughs from community participation in MyCP, receiving care at a CP Research Network Center, or by participating in our research.
Datavant allows us to connect many different sources of information about a person’s health. For example, by connecting information generated by a fitness tracker like a FitBit or a smart phone with our registries, the CP Research Network could find patterns of movement that lead to better cardiovascular health.
By organizing millions of pieces of information about living with cerebral palsy we are on the path to unique discoveries. These exciting opportunities are possible because our community members are granting permission for us to use their information in ways that takes advantage of new technology trends, while simultaneously maintaining their privacy.
Tune in by signing up for the webinar and learn how technology and information sharing is allowing us to move CP research into the forefront of scientific advancements. And if you haven’t already, consider joining MyCP!
https://cprn.org/wp-content/uploads/2021/03/Kean-J-11-5x7-1-e1615582030684.jpg400400Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-04-14 09:08:582021-05-17 13:09:45Discovery and Improved Health from your Lived Experience
Thanks to our merger with CP NOW and new research studies already off the ground, it’s been an exciting year so far for the CP Research Network. So, what’s next? Our new website!
Since our January merger, our team has been busy integrating four websites into one to create a new online home – cprn.org – a place where we will bring together our community, research efforts, education, and wellbeing programs.
Here’s a sneak peek of what’s to come!
To make things easier to navigate, our one platform, CPRN.org, will feature the four cornerstones of the combined organization:
1) Community Join a committed group of community members on the MyCP platform at CPRN.org. All are welcome, including adults with CP, parents, and caregivers, clinicians, researchers, and advocates shaping impactful research to improve the lives of people with CP.
2) Research The Cerebral Palsy Research pages of our soon-to-be-released site will fill you in on our active studies and highlight opportunities to participate in ongoing research to improve healthcare outcomes for people with CP.
3) Education Please take advantage of our educational resources and programs to help navigate CP from diagnosis to therapies, treatments, and interventions to maintaining mental and physical health and transitioning to life as an adult with CP. You’ll find many toolkits, guides, and resources all ready to download on our education webpages.
4) Health and wellbeing Log on for programs to maintain and improve physical health and wellbeing. We are working with our trusted partners to implement regular opportunities for community members to participate in healthy activities in their communities.
Excited? We are too! We’ll reveal our launch date soon, but for now, please keep swinging by cpdailyliving.com, cpnowfoundation.org, cprn.org, and mycp.org for everything you need to know about the CP community.
https://cprn.org/wp-content/uploads/2021/03/Screen-Shot-2021-03-31-at-5.14.47-PM.jpg737902Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-04-01 05:30:002021-05-17 12:11:00Here’s a sneak peek at our new website!
Today is National Cerebral Palsy Awareness Day! We have all had a busy month trying to educate our friends, family and the public about what they can do to increase awareness and improve wellness for people with CP. We have tried to make the most of the month here at the CP Research Network including:
Join in the fun. Post a pic of you or your family in green on Instagram or update your cover page with one of our banners on Facebook. Tag us to be entered into our drawing.
https://cprn.org/wp-content/uploads/2021/03/Copy-of-National-CP-Awareness-Day.jpg788796Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-03-25 10:46:462021-06-18 14:34:35Double Down on Cerebral Palsy Awareness
Exercise has long been hailed as good for the body and mind, regardless of people’s abilities or levels of fitness. But for people with CP, who are at high risk of chronic diseases, physical therapy and exercise are vital components to staying strong and healthy…
Anyone can improve their health with exercise and movement. Still, for the CP community, who often experience muscle tightness and symptoms of early aging, the stakes for wellness are even higher.
“Adults with CP have a higher risk than people who don’t have CP for cardiovascular, renal, musculoskeletal (bone and joint problems), and respiratory disease,” says Dr. Ed Hurvitz, Chair of Physical Medicine and Rehabilitation at the University of Michigan. “The common pathway is inflammation. People who are obese, who have poor fitness levels and don’t move around enough, have a high level of this inflammatory state.
This may be one of the things contributing to the higher risk of chronic diseases in adults with cerebral palsy.”
The American College of Sports Medicine recommends that adults do at least 150 minutes per week of moderate-intensity, heart rate raising, exercise, and muscle-strengthening activity at least twice a week.
“There is no evidence to suggest that these requirements should be any different for people with cerebral palsy,” states guidance from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). “Many people with cerebral palsy are very physically inactive, and these recommendations may be quite difficult to achieve.
“Some exercises may not be possible, depending on the severity of cerebral palsy. The good news is, many health benefits may be achieved by doing less than the recommendations. Being fit and exercising should not be considered all-or-nothing. Start small, become familiar with aerobic and resistance exercise, and gradually progress exercise time, frequency and intensity. It is better to stick with a program than to do nothing, simply because you cannot reach the recommended levels.”
So how can the CP community build stamina and strength? As an extension of physical therapy, many people with CP are encouraged to participate in adaptive fitness – otherwise known as personal training adapted to their abilities. Such training sessions could include cardio, stretching, strength training, core work, and gentler movements such as Pilates.
An ongoing hurdle for our community is how the fitness and exercise industry is predominantly tailored to the majority-abled. Thankfully, as we shift into a more accessible society for all, inclusivity is on the minds of many organizations. All over the world, multi-million dollar brands such as Peloton acknowledge the need to be more adaptive.
“Accessibility is very important to us, and our teams have been actively working on the implementation of more accessibility features, most recently for the visually impaired on our software and hardware,” an accessibility spokesperson told the CP Research Network in an email. Members of our community were also encouraged to join Peloton’s member focus groups to test accessibility.
Meanwhile, changemakers like adaptive fitness coach Steph “The Hammer” Roach are paving the way to empower differently-abled athletes.
Roach, the first woman with cerebral palsy to become an L2-certified Crossfit coach, was the owner and manager of a gym in North Carolina when the pandemic hit in 2020.
Determined to turn the experience into a positive, she quickly pivoted to build an online fitness organization Staying Driven providing all-inclusive adaptive training classes for a low monthly cost.
The organization provides programs and coaching and a supportive community to help everyday people achieve a greater fitness potential. Classes range from mixed ability work-outs to classes specifically for spinal cord injury athletes or the developmentally challenged.
“In this time of isolation, you can still be engaged to be fit, athletic, and social,” says Roach, who says she saw a real need for accessible adaptive fitness for people across the differently-abled community. “Making it fun for athletes is pretty awesome, and I love seeing their transformation week after week. It’s not about lifting heavy weights; it’s really cool when an athlete comes to you and says, my doctor says my blood pressure is awesome. My doctor says I’ve lost 8lb, and I’m feeling great.”
Alex McGee enjoys the classes by Staying Driven
Roach’s clients include Alex McGee, 25, who has moderate CP and uses a posterior walker. He discovered StayingDriven in a CP support group at a time when he felt isolated and that he had lost confidence,
“When you have CP, you always need physical exercise and to stay in shape because otherwise, you’ll lose it,” he explains. “It’s very hard to find things for adults for CP. If it were up to my physician, she’d have me come in twice a week for PT, but with insurance, that’s not possible. My therapist and I talked about adaptive fitness.”
Alex attends weekly Staying Driven classes online, working out via Zoom at the home he shares with his parents in Florida.
“It’s hard, but doing it feels really good,” he says. “Core is important for the ability to walk, so I work with a core ball. The instructors adapt the exercises to the capacities of the people attending. They ask for concerns and tell you to use a chair if you need it. You can work out sitting down or standing up. They give you the option. I work out on the carpet in my bedroom for safety, so it’ll be alright if I fall. Some days you have better balance than others. We know our bodies better than anyone else.”
As well as feeling physically stronger, Alex says he has noticed mental health benefits from attending a group class. He has come to view his fellow athletes who turn up week after week as friends.
“Most of the time, it’s the same people, so the group class is a social benefit,” he says. “There’s social interaction, and they tease me pretty good. If you’re trapped in the house, then I recommend it.”
Staying Driven broadcasts interactive classes twice a day, Monday to Friday and once on Saturday. Athletes are charged $20 a month and can take any hour-long class.
Participants are required to sign a safety waiver to ensure they are willing and able to do the sessions. Roach advises finding the right balance between challenging and safe.
“We don’t require any particular equipment, and athletes use things they have already like water bottles or pillows,” adds Roach. “I’m a huge advocate of exploration and allowing people to realize what they can and can’t do on their own.”
Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle. The CP Research Network is partnering with the National Center on Health, Physical Activity and Disability (NCHPAD) to enroll ten CP community members in a free MENTOR program focused on health, wellness, exercise, mindfulness, and nutrition. Read more here .
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The Cerebral Palsy Research Network is proud to sponsor this month’s Congressional Neuroscience Caucus (CNC) briefing focused on improving neurodevelopmental disorders.
The briefing entitled “On Neurodevelopmental Disorders: The Challenges and the Opportunities” will occur on Wednesday, March 17, and has been organized by the American Brain Coalition. CP Research Network is an event sponsor alongside Autism Speaks, the American Academy of Neurology, and the Society for Neuroscience.
The bipartisan Congressional Neuroscience Caucus promotes a better understanding of how the brain develops, functions, and ages and promotes legislation that will further advance neuroscience research. It is co-chaired by Representative Cathy McMorris Rodgers (R-WA) and Representative Earl Blumenauer (D-OR). The caucus seeks to raise awareness about the millions of Americans afflicted with neurological disorders or mental illnesses.
CP Research Network leader Dr. Bhooma Aravamuthan, a pediatric neurologist and movement disorders specialist from Washington University, will be one of three experts presenting at the briefing. She will outline the need for more research for cerebral palsy (CP) and address how neurodevelopmental disorders impact children with CP.
“I am thrilled to have the opportunity to explain the importance of research in improving the lives of people with CP to members of Congress,” said Dr. Aravamuthan. “Many basic knowledge gaps exist in our understanding of CP and how to treat it. I look forward to helping Congressional attendees understand the impact of CP on their constituents and appreciate the clear need for additional research in the field.”
Our team has advocated for people with CP throughout our journey to creating the CP Research Network. This includes working with the National Institutes of Health (NIH) for increased attention to CP research. We will continue to call for improvements in research and care and amplify the voices of our community.
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The Cerebral Palsy Research Network launched a new CP Awareness campaign today in honor of CP Awareness Month. We have created a set of Facebook (FB) Cover Photo banners with key facts about CP for you to install on your personal FB page. Each day we will be sharing more on our social media pages, and you can help us educate the general public about CP by sharing this information.
Spread the word and win a CP Research Network t-shirt or coffee mug!
You can also enter into our drawing* for helping spread the word about CP.
On Facebook, send us a screen shot from your feed of your updated cover photo and we will enter your name in our drawing. Send a screen shot from a share of one of our CP Facts with at least five likes and we will enter your name again. Share all 20 facts that we post this month (each with five or more likes) and we will enter you 20 times!
On Instagram, share our CP Facts in your story, tag us and we will enter your name in our drawing for each tagged CP fact that you share! We will draw for two winners – one from Facebook, one from Instagram.
To participate in the Facebook drawing, send your screen shots to cpawareness@cprn.org. For Instagram, just tag us on your story on Instagram with every share of our CP Facts.
*Fine Print: You must have a shipping address in the United States to win. Two names will be drawn – one from IG participants and one from FB participants. The limit on entries (screenshots of shares and covers) is 30 for FB and 20 (story tags) for IG. Drawing will happen in the first week of April. Winner can chose between mug or t-shirt in an appropriate size. Shipping will take at least two weeks.
https://cprn.org/wp-content/uploads/2021/03/cprn-cpawareness-fact-3.png9241640Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-03-06 11:44:062021-05-17 12:58:43Cerebral Palsy Awareness: Spread the Word!
Yesterday the Cerebral Palsy Research Network announced a partnership with Datavant Corporation of San Francisco, CA, to enable linking of data sets to accelerate new findings in cerebral palsy (CP) research. The CP Research Network will initially use data linking technology to facilitate the CP Genetics study we are launching next month. Data linking allows researchers to combine types of information such as genetics and patient descriptions, from different sources to make new discoveries. For example, participants in the CP Genetics study will provide saliva to Dr. Michael Kruer’s lab at the University of Arizona to identify new genes that are involved in causing CP. That genomic data will be linked to the participants’ clinical characteristics, or medical description of their CP, found in our CP registry. This linkage will allow us to find commonalities between genes and how CP appears in the patient population.
“It is an exciting time in cerebral palsy research,” said Kruer, a neurogeneticist in the Barrow Neurological Institute at Phoenix Children’s and associate professor at the University of Arizona College of Medicine – Phoenix. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.”
Datavant’s data linking technology is unique because it allows this type of information to be connected independent of the timing of annual hospital visits for CP and the choice to be in the study. Datavant software generates a unique set of identifiers per patient that stored with a medical record but are devoid of any personal identifying information. The software can be used by new studies such as the genetics study to find matches between patient records and participants’ genes. This matching process can help facilitate new discoveries in CP by connecting new study data to our CP Registry. The CP Research Network is actively pursuing other existing study datasets that could be linked with our registry to enable new findings to improve healthcare for people with CP.
https://cprn.org/wp-content/uploads/2021/03/datavant-800.jpeg450800Paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngPaul2021-03-05 13:45:182021-05-17 13:08:51Data Linking Partnership Accelerates Discovery in Cerebral Palsy Research
