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!
“Ethan knows he’s different and he’s really happy and content.”
Toddler Ethan Lopez was diagnosed with spastic quadriplegia cerebral palsy (CP) and dystonia at the age of two. Today, his mother Brittany, 31, shares her joy at seeing her son take everything in his stride…
Just like many parents with a young child, Brittany Lopez, and her husband Esteban, juggle demanding full-time jobs with caring for their three-year-old son.
Yet life for the Lopez family, who live in Austin, Texas, can be more challenging than for most. On top of the usual toddler chaos and antics, they must factor in a multitude of therapies for their son each day.
Little Ethan was first diagnosed with quadriplegia spastic cerebral palsy and dystonia after his parents noticed he was slow to reach his developmental milestones as a baby. The determined toddler can now take a few steps using a walker and his family is working hard to help him progress.
“Ethan isn’t able to walk or stand independently and while he knows he’s different he’s really happy and content,” explains Brittany. “He’ll likely have his first surgery this year at three or four-years-old but can self-propel his wheelchair, crawl, and sit independently. He has an adaptive bike and enjoys riding around with his friends. He loves to play, wrestle, and be goofy.”
Prior to his pre-school day, Ethan undergoes therapy and rotates between physical therapy, occupational therapy, and speech therapy four days a week. The family’s day often begins at 5:30 a.m. While Brittany carries out her duties as a corporate controller for veterinary clinics and Esteban goes to work at a mortgage company, Ethan attends an Early Childhood Special Education (ECSE) preschool program in Austin. In the afternoons, the couple balance work commitments with more care for Ethan and ensure the little boy has a good balance of treatment and free time to play.
“He is into cars and books and a TV show called Puppy Dog Pals,” says Brittany. “He even has a stuffed toy of a little character from the show called Lollie who has a wheelchair. We know life may be challenging for Ethan but being part of the CP Research Network has really offered our family a lifeline. I would encourage anyone in our position to be active in the network. We are doing everything in our power to give him the most fulfilling life – whatever it looks like for him.”
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 .
https://cprn.org/wp-content/uploads/2021/03/steph-hammerman.jpeg960720paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngpaul2021-03-22 05:30:002021-06-18 14:37:42Adaptive Fitness and Cerebral Palsy
“You can’t expect a group of people to respect you more than you respect yourself.” — John Borland
Retired health inspector John Borland, 68, has fought stigma and the feeling of being underestimated throughout his life with cerebral palsy. Today he shares how a relentless ‘can-do’ approach to living has helped him meet his full potential.
John Borland with his family
John Borland can clearly remember the first time he realized he was ‘different’ from others.
“I was about two years old,” he says. “The short story is that I was lying on our living room floor playing with my father. I watched him get up from his stomach on to his knees and then on to his feet. I tried several times to do what my father did – to be like him – but each time I fell over. After several tries, I knew I was not the same as others.”
Around the same time, John’s parents, Samuel and Patricia, sought a diagnosis, learning that their son likely had spastic cerebral palsy and could be ‘slow to develop’. Under the care of orthopedic surgeons at Hamot Hospital in Erie, PA, he was able to learn to walk. During a time where there was often the assumption that children with cerebral palsy were ‘mentally retarded’ John was also required to take a cognitive test to attend a mainstream elementary school.
“It was ingrained in me that I was not the same, not as good as able-bodied people,” he says. “I was largely ignored by the other kids in school, and sometimes I was bullied. I had to fight to break that mold to attend college.”
John graduated from Edinboro State College (currently Edinboro University of Pennsylvania) in 1974 with a Bachelor of Science in Biology.
After initially attending graduate school, John was forced to change routes and began to hunt for permanent employment. He found some temporary work but faced many rejections – some he believes stemmed from fear of his disability.
It hit him hard but he found solace traveling to Alaska with his friend Skip and his family. During the four-month trip, his friends, as they always did, encouraged him to do everything they did – canoeing, hiking, and cross-country skiing.
“They never looked at me as disabled,” he says. “It made me realize I didn’t want to be marked as exceptional for being disabled. I want to be marked as exceptional. You can’t expect a group of people to respect you more than you respect yourself.”
Back home in Clarendon, John met with case worker, determined to fight in his corner and who, after five years, found a position with Pennsylvania State government. Throughout his 33-year career, John remained passionate about his work, among other duties, initially conducting health inspections at restaurants and other public facilities. Later as a program specialist, John worked to implement and facilitate drinking water staff training as well as contributing to state and federal efforts concerning drinking water regulation and facility improvement. John also played a major part in developing Pennsylvania’s storage tank and biosolids programs and with facilitating municipal management of home wastewater systems.
In his spare time, John embraced his wanderlust, travelling to a total of 43 states throughout the U.S. where he enjoyed adventures hiking, camping, canoeing, skiing or simply taking in the peace of nature. Sadly, he still suffered moments of doubt, even contemplating suicide, and feared he would not find companionship.
“As a young adult, I couldn’t find acceptance or someone to want to be with me romantically,” he shares. “This grew to be a major source of darkness and trouble for me.”
With difficulty, John pushed through his depression and worked hard to gain a promotion, relocating to Harrisburg, PA. It was there he was matched with his future wife, Judy, by a dating agency.
“I forced myself to call her and begin a conversation,” he recalls. “I had to tell her that I was disabled and I figured when I did the call would be over. To my great surprise (as this had never ever happened to me before), she said, “I don’t care. When do you want to get together?”
The couple became engaged and married in 1990. They have two children, Judy’s son Troy from her previous marriage and Joshua, who was born in 1992. Since then, the family has been blessed with two grandchildren.
As a passionate contributor to the CP Research Network community, John now wishes to help young people with cerebral palsy to have the confidence to achieve their hopes and dreams.
He adds: “We need to open the eyes of a great many people so they can see who a disabled individual can truly be and what they can achieve.”
https://cprn.org/wp-content/uploads/2021/03/image001.jpg357488paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngpaul2021-03-15 05:30:002021-05-17 12:50:23CP Stories: The “Can Do” John Borland
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.
https://cprn.org/wp-content/uploads/2021/03/Congressional-Neuroscience-Caucus.jpg300300paulhttps://cprn.org/wp-content/uploads/2021/02/cprn-logo-new-300x187.pngpaul2021-03-11 06:00:002021-05-17 12:53:14CP Research Network supports advocacy efforts to advance research for neurological conditions
“We believe this study will move the needle and help patients and their families.” – Dr. Michael Kruer
As he embarks on a the Cerebral Palsy Research Network’s first publicly funded study into genetic causes of cerebral palsy, Dr. Michael Kruer, Director of the Pediatric Movement Disorders Program at Phoenix Hospital, hopes the landmark research will help transform patient care.
Working as a dedicated pediatric neurologist, Dr. Michael Kruer is passionate about the young patients in his care and how to improve their treatments and therapies.
Now, as he launches a three-year study examining how genetic factors connect with a CP diagnosis, he is hopeful the research could lead to better outcomes for many in the CP community.
“We believe this study will not only move the needle for research but has the potential to impact individual patients and their families,” he tells the CP Research Network.
Kruer is no stranger to people’s challenges with CP, having dedicated the last ten years to the study of genomics as it relates specifically to the condition. He received the CP Research Network’s first publicly funded (NIH) grant to launch his “Genetics Causes of Cerebral Palsy” study after approaching the network to collaborate on research.
Five hundred participants and their biological parents will participate at Phoenix Children’s Hospital, AZ, Al DuPont Children’s Hospital, DE, Nationwide Children’s Hospital, OH, Seattle Children’s Hospital, WA, and Children’s Hospital Colorado, CO.
“The beauty of working with the CP Research Network is it collects information that doctors and therapists enter as they are caring for people with CP at the participating sites,” adds Kruer. “It’s a wealth of information that we’re then able to leverage to try to take the genetics and make sense of it in a way that can impact diagnoses and treatments.”
The study, which kicked off this month, in unison with CP Awareness Month, will compare the genome (the person’s genetic material and instructions) of people with CP with those of their parents, known as whole-exome sequencing analysis. If a participant with CP has children of their own, then researchers will track changes in the genome of multiple generations of the same family, which will be a first for clinicians.
Until recently, CP was not known to have a genetic connection. Yet, increasingly research indicates that as many as one in four individuals may have a genetic cause for their CP.
“Dogma in medicine is hard to change,” admits Kruer. Yet he remains optimistic that perceptions can gradually shift with sound research. Indeed, initial research linking genes to CP is already opening doors to new avenues of treatment for patients.
“The most cutting-edge genetic technologies are exciting, but it’s only one side of the coin,” he continues. “If you don’t know how that technology relates to a real person and his or her symptoms, what they’ve gone through etc., then I think it’s an incomplete picture.”
Dr. Kruer will share why genetics matter and detail the specifics of his latest study during a MyCP webinar this evening (Wednesday, March 10) at 8 pm EST. You can register here.
If your family is interested in taking part, look for an invitation from your CP clinic at one of the participating sites. We will send you an invitation to our online consent application. Once the family gives their consent, they will receive saliva-based DNA sample collection kits.
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
Discovery and Improved Health from your Lived Experience
/in News /by paulNext 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!
Here’s a sneak peek at our new website!
/in Education, News, Research, Wellbeing /by paulThanks 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.
CP Stories: Brittany Lopez
/in CP Stories /by paul“Ethan knows he’s different and he’s really happy and content.”
Toddler Ethan Lopez was diagnosed with spastic quadriplegia cerebral palsy (CP) and dystonia at the age of two. Today, his mother Brittany, 31, shares her joy at seeing her son take everything in his stride…
Just like many parents with a young child, Brittany Lopez, and her husband Esteban, juggle demanding full-time jobs with caring for their three-year-old son.
Yet life for the Lopez family, who live in Austin, Texas, can be more challenging than for most. On top of the usual toddler chaos and antics, they must factor in a multitude of therapies for their son each day.
Little Ethan was first diagnosed with quadriplegia spastic cerebral palsy and dystonia after his parents noticed he was slow to reach his developmental milestones as a baby. The determined toddler can now take a few steps using a walker and his family is working hard to help him progress.
“Ethan isn’t able to walk or stand independently and while he knows he’s different he’s really happy and content,” explains Brittany. “He’ll likely have his first surgery this year at three or four-years-old but can self-propel his wheelchair, crawl, and sit independently. He has an adaptive bike and enjoys riding around with his friends. He loves to play, wrestle, and be goofy.”
Prior to his pre-school day, Ethan undergoes therapy and rotates between physical therapy, occupational therapy, and speech therapy four days a week. The family’s day often begins at 5:30 a.m. While Brittany carries out her duties as a corporate controller for veterinary clinics and Esteban goes to work at a mortgage company, Ethan attends an Early Childhood Special Education (ECSE) preschool program in Austin. In the afternoons, the couple balance work commitments with more care for Ethan and ensure the little boy has a good balance of treatment and free time to play.
“He is into cars and books and a TV show called Puppy Dog Pals,” says Brittany. “He even has a stuffed toy of a little character from the show called Lollie who has a wheelchair. We know life may be challenging for Ethan but being part of the CP Research Network has really offered our family a lifeline. I would encourage anyone in our position to be active in the network. We are doing everything in our power to give him the most fulfilling life – whatever it looks like for him.”
Double Down on Cerebral Palsy Awareness
/in News /by paulToday 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.
Adaptive Fitness and Cerebral Palsy
/in News /by paulAdaptive Fitness Coach
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.”
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 .
CP Stories: The “Can Do” John Borland
/in CP Stories /by paul“You can’t expect a group of people to respect you more than you respect yourself.” — John Borland
Retired health inspector John Borland, 68, has fought stigma and the feeling of being underestimated throughout his life with cerebral palsy. Today he shares how a relentless ‘can-do’ approach to living has helped him meet his full potential.
John Borland can clearly remember the first time he realized he was ‘different’ from others.
“I was about two years old,” he says. “The short story is that I was lying on our living room floor playing with my father. I watched him get up from his stomach on to his knees and then on to his feet. I tried several times to do what my father did – to be like him – but each time I fell over. After several tries, I knew I was not the same as others.”
Around the same time, John’s parents, Samuel and Patricia, sought a diagnosis, learning that their son likely had spastic cerebral palsy and could be ‘slow to develop’. Under the care of orthopedic surgeons at Hamot Hospital in Erie, PA, he was able to learn to walk. During a time where there was often the assumption that children with cerebral palsy were ‘mentally retarded’ John was also required to take a cognitive test to attend a mainstream elementary school.
“It was ingrained in me that I was not the same, not as good as able-bodied people,” he says. “I was largely ignored by the other kids in school, and sometimes I was bullied. I had to fight to break that mold to attend college.”
John graduated from Edinboro State College (currently Edinboro University of Pennsylvania) in 1974 with a Bachelor of Science in Biology.
After initially attending graduate school, John was forced to change routes and began to hunt for permanent employment. He found some temporary work but faced many rejections – some he believes stemmed from fear of his disability.
It hit him hard but he found solace traveling to Alaska with his friend Skip and his family. During the four-month trip, his friends, as they always did, encouraged him to do everything they did – canoeing, hiking, and cross-country skiing.
“They never looked at me as disabled,” he says. “It made me realize I didn’t want to be marked as exceptional for being disabled. I want to be marked as exceptional. You can’t expect a group of people to respect you more than you respect yourself.”
Back home in Clarendon, John met with case worker, determined to fight in his corner and who, after five years, found a position with Pennsylvania State government. Throughout his 33-year career, John remained passionate about his work, among other duties, initially conducting health inspections at restaurants and other public facilities. Later as a program specialist, John worked to implement and facilitate drinking water staff training as well as contributing to state and federal efforts concerning drinking water regulation and facility improvement. John also played a major part in developing Pennsylvania’s storage tank and biosolids programs and with facilitating municipal management of home wastewater systems.
In his spare time, John embraced his wanderlust, travelling to a total of 43 states throughout the U.S. where he enjoyed adventures hiking, camping, canoeing, skiing or simply taking in the peace of nature. Sadly, he still suffered moments of doubt, even contemplating suicide, and feared he would not find companionship.
“As a young adult, I couldn’t find acceptance or someone to want to be with me romantically,” he shares. “This grew to be a major source of darkness and trouble for me.”
With difficulty, John pushed through his depression and worked hard to gain a promotion, relocating to Harrisburg, PA. It was there he was matched with his future wife, Judy, by a dating agency.
“I forced myself to call her and begin a conversation,” he recalls. “I had to tell her that I was disabled and I figured when I did the call would be over. To my great surprise (as this had never ever happened to me before), she said, “I don’t care. When do you want to get together?”
The couple became engaged and married in 1990. They have two children, Judy’s son Troy from her previous marriage and Joshua, who was born in 1992. Since then, the family has been blessed with two grandchildren.
As a passionate contributor to the CP Research Network community, John now wishes to help young people with cerebral palsy to have the confidence to achieve their hopes and dreams.
He adds: “We need to open the eyes of a great many people so they can see who a disabled individual can truly be and what they can achieve.”
CP Research Network supports advocacy efforts to advance research for neurological conditions
/in News /by paulThe 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.
Is your Representative a member of the Congressional Neuroscience Caucus? Not on the list? Contact them and ask them to join today!
CP Stories: Why Genetics Matter
/in CP Stories, Research /by paul“We believe this study will move the needle and help patients and their families.” – Dr. Michael Kruer
As he embarks on a the Cerebral Palsy Research Network’s first publicly funded study into genetic causes of cerebral palsy, Dr. Michael Kruer, Director of the Pediatric Movement Disorders Program at Phoenix Hospital, hopes the landmark research will help transform patient care.
Working as a dedicated pediatric neurologist, Dr. Michael Kruer is passionate about the young patients in his care and how to improve their treatments and therapies.
Now, as he launches a three-year study examining how genetic factors connect with a CP diagnosis, he is hopeful the research could lead to better outcomes for many in the CP community.
“We believe this study will not only move the needle for research but has the potential to impact individual patients and their families,” he tells the CP Research Network.
Kruer is no stranger to people’s challenges with CP, having dedicated the last ten years to the study of genomics as it relates specifically to the condition. He received the CP Research Network’s first publicly funded (NIH) grant to launch his “Genetics Causes of Cerebral Palsy” study after approaching the network to collaborate on research.
Five hundred participants and their biological parents will participate at Phoenix Children’s Hospital, AZ, Al DuPont Children’s Hospital, DE, Nationwide Children’s Hospital, OH, Seattle Children’s Hospital, WA, and Children’s Hospital Colorado, CO.
“The beauty of working with the CP Research Network is it collects information that doctors and therapists enter as they are caring for people with CP at the participating sites,” adds Kruer. “It’s a wealth of information that we’re then able to leverage to try to take the genetics and make sense of it in a way that can impact diagnoses and treatments.”
The study, which kicked off this month, in unison with CP Awareness Month, will compare the genome (the person’s genetic material and instructions) of people with CP with those of their parents, known as whole-exome sequencing analysis. If a participant with CP has children of their own, then researchers will track changes in the genome of multiple generations of the same family, which will be a first for clinicians.
Until recently, CP was not known to have a genetic connection. Yet, increasingly research indicates that as many as one in four individuals may have a genetic cause for their CP.
“Dogma in medicine is hard to change,” admits Kruer. Yet he remains optimistic that perceptions can gradually shift with sound research. Indeed, initial research linking genes to CP is already opening doors to new avenues of treatment for patients.
“The most cutting-edge genetic technologies are exciting, but it’s only one side of the coin,” he continues. “If you don’t know how that technology relates to a real person and his or her symptoms, what they’ve gone through etc., then I think it’s an incomplete picture.”
Dr. Kruer will share why genetics matter and detail the specifics of his latest study during a MyCP webinar this evening (Wednesday, March 10) at 8 pm EST. You can register here.
If your family is interested in taking part, look for an invitation from your CP clinic at one of the participating sites. We will send you an invitation to our online consent application. Once the family gives their consent, they will receive saliva-based DNA sample collection kits.
Cerebral Palsy Awareness: Spread the Word!
/in News /by paulThe 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.
You can download one or all of the banners at https://cprn.org/cp-awareness-fact-facebook-covers/.
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.
Data Linking Partnership Accelerates Discovery in Cerebral Palsy Research
/in News /by paulYesterday 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.