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Dr. Rimmer, with rimless glasses, in a brown coat, white shirt and red tie with Dr. Peterson in a dark blazer and blue shirt.

Webinar on Wellness for Adults with CP

A white placed holder with 'wellness' written across it for the Webinar on Wellness for Adults with CP. The Cerebral Palsy Research Network will offer an informational webinar on wellness for adults with CP on February 23 at 5 pm ET. Earlier in February, we announced that we had partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer a free eight-week virtual course on mindfulness, exercise and nutrition (MENTOR) for people with CP and other disabilities. The webinar will feature NCHPAD Director James Rimmer, PhD and University of Michigan CP researcher Mark Peterson, PhD, discussing the benefits of exercise, mindfulness and nutrition. Several past participants from our pilot of MENTOR in April 2021 will join the webinar to answer questions as well.

“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.

Three photos show a woman in a wheelchair lifting weights, a nutritious meal and a peaceful day the beach

Free Mindfulness, Exercise, and Nutrition Course

A cutting board and knife are laid out with healthy ingredients and a fry pan.

One 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 Cerebral Palsy Research Network has partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to provide free virtual training classes on mindfulness, exercise and nutrition (MENTOR). NCHPAD is funded through a grant from the Centers for Disease Control to promote opportunities that are crucial to the health of people with a physical disability. The CP Research Network piloted the MENTOR program in April 2021 to provide feedback on the program for people with cerebral palsy (CP). NCHPAD was recently funded for the next five years and chose the CP Research Network as their partner for the CP community.

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.

A woman in a chair lifting weights, a girl swimming in a triathalon, a college graduate seeking work and triples in a swing.

Cerebral Palsy Awareness Photo Contest

Young man with cerebral palsy sits in his red walker, while facing the ocean on the sandy beach.In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network has launched a photo contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery of submissions and will award $1,000 in cash prizes to five winners on March 25, 2022 – the day officially designated as National CP Awareness Day in the United States.

“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:

Category Prize
Creativity $100
Diversity $100
Participation and inclusion $100
Perseverance $100
Physical activity $100
Best Overall $500

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

Robert Bollo, MD, with a shaved head and a smile, in a dark suit, white shirt and red striped tie

Dr. 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

  1. Fjelstad AB, Hommelstad J, Sorteberg A. Infections related to intrathecal baclofen therapy in children and adults: frequency and risk factors. J Neurosurg Pediatr. 2009 Nov;4(5):487-93. doi: 10.3171/2009.6.PEDS0921. PMID: 19877786.
  2. Tyack L, Copeland L, McCartney L, Waugh MC. Adverse events associated with paediatric intrathecal baclofen in Australia: 5 years of data collection. J Paediatr Child Health. 2021 Feb;57(2):258-262. doi: 10.1111/jpc.15194. Epub 2020 Sep 25. PMID: 32975337.
  3. Imerci A, Rogers KJ, Pargas C, Sees JP, Miller F. Identification of complications in paediatric cerebral palsy treated with intrathecal baclofen pump: a descriptive analysis of 15 years at one institution. J Child Orthop. 2019 Oct 1;13(5):529-535. doi: 10.1302/1863-2548.13.190112. PMID: 31695821; PMCID: PMC6808077.
  4. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  5. Desai VR, Raskin JS, Mohan A, Montojo J, Briceño V, Curry DJ, Lam S. A standardized protocol to reduce pediatric baclofen pump infections: a quality improvement initiative. J Neurosurg Pediatr. 2018 Apr;21(4):395-400. doi: 10.3171/2017.10.PEDS17248. Epub 2018 Jan 26. PMID: 29372853.
  6. Spader HS, Bollo RJ, Bowers CA, Riva-Cambrin J. Risk factors for baclofen pump infection in children: a multivariate analysis. J Neurosurg Pediatr. 2016 Jun;17(6):756-62. doi: 10.3171/2015.11.PEDS15421. Epub 2016 Feb 26. PMID: 26919315.
  7. Haranhalli N, Anand D, Wisoff JH, Harter DH, Weiner HL, Blate M, Roth J. Intrathecal baclofen therapy: complication avoidance and management. Childs Nerv Syst. 2011 Mar;27(3):421-7. doi: 10.1007/s00381-010-1277-9. Epub 2010 Sep 18. PMID: 20853002.
  8. Motta F, Antonello CE. Analysis of complications in 430 consecutive pediatric patients treated with intrathecal baclofen therapy: 14-year experience. J Neurosurg Pediatr. 2014 Mar;13(3):301-6. doi: 10.3171/2013.11.PEDS13253. Epub 2014 Jan 3. Erratum in: J Neurosurg Pediatr. 2014 May;13(5):588. PMID: 24404968.
  9. Borowski A, Littleton AG, Borkhuu B, Presedo A, Shah S, Dabney KW, Lyons S, McMannus M, Miller F. Complications of intrathecal baclofen pump therapy in pediatric patients. J Pediatr Orthop. 2010 Jan-Feb;30(1):76-81. doi: 10.1097/BPO.0b013e3181c6b257. PMID: 20032747.
  10. Gooch JL, Oberg WA, Grams B, Ward LA, Walker ML. Complications of intrathecal baclofen pumps in children. Pediatr Neurosurg. 2003 Jul;39(1):1-6. doi: 10.1159/000070870. PMID: 12784068.
A headshot of Lily Collison with short, dark hair, the cover of Pure Grit and blond haired Kara Buckley

Pure Grit: An interview with the authors

Ila Eckhoff with tight curly brown hair smiles broadly with dark glasses and a light blue fleece over her v-neck shirt.

Ila 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 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At 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!

 

 

 

 

Cerebral Palsy Fitness program gets sponsorship from Neurocrine Biosciences

Neurocrine Biosciences Sponsors Cerebral Palsy Fitness

Neurocrine Biosciences logo

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.
Dr. Bhooma Aravamuthan, pictured in a white lab coat and dark rimmed glasses, will speak about dystonia in CP

Update on Dystonia in Cerebral Palsy

On 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/.

A blond woman kneels while speaking with her daughter braided hair in a wheelchair.

Results: Communication and Participation in CP

Kristen Allison, PhD, CCC-SLP. A smiling woman with long blond hair wearing earrings and a light grey sweater.

Kristen Allison, PhD, CCC-SLP, an Assistant Professor at Northeastern, is this month’s featured speaker for the MyCP Webinar Series, presenting the results of her recent study in speech and language for children with CP.

Next Wednesday, November 17, at 8 pm, Kristen Allison, PhD, CCC-SLP, will present the results of her study of Speech and Language Predictors of Participation in Children with Cerebral Palsy, as part of the CP Research Network’s MyCP Webinar series. Dr. Allison received our Research CP grant award in 2019 for her study investigating how speech and language capability affect a child’s quality of life in terms of participation in activities. Attendees of this webinar will learn what she discovered and be able to participate in a live Q&A with Dr. Allison.

“We found that several aspects of a child’s speech and language skills affect how often they participate and how involved they are in social activities.” said Dr. Allison. “Our results highlight just how important effective communication is to quality of life for children with CP!”

Dr. Allison is an Assistant Professor in the Department of Communication Sciences & Disorders and the director of the Speech Motor Impairment & Learning (SMILe) Lab at Northeastern University. The study was hosted and distributed through th CP Research Network Community Registry and data collection was completed in 2020. Dr. Allison will not only share the results of the study but talk about its meaning for both parents of children with CP, but also how the data will be used to inform future research questions.

Community members interesting in learning about the results of Dr. Allison’s research can sign up to receive webinar login instructions. People who have already registered for the whole MyCP webinar series will be sent an invitation with login details prior to the webinar. Note: Our MyCP webinar series now require a Zoom account to sign in. You can get a free Zoom account here.

The MyCP webinar on assessing pain in adults with CP will be delivered by Drs Gannotti and Noritz

Assessing Pain for Adults with Cerebral Palsy

Drs. Gannotti and Noritz, dressed in business attire, at an informal meeting in Austin, TX

Drs Gannotti and Noritz, clinicians who treat both children and adults, will present on assessing pain in adults with cerebral palsy (CP).

This month’s MyCP webinar will focus on the CP Research Network’s Adult Care quality improvement (QI) initiative at 8 pm ET on Monday, October 25. CP Research Network leaders Garey Noritz, MD and Mary Gannotti, PT, PhD, will provide an overview of this initiative which is focused on pain for adults with CP. Quality improvement, like clinical research, is aimed at improving health outcomes but using a different methodology to achieve those outcomes. QI is exciting because it can change health outcomes much more rapidly than clinical research. The webinar will include a brief overview of how QI enables these faster changes in outcomes.

Our Adult Care QI initiative includes clinicians that treat adults with CP and community advocates working together with a global aim of improving the care that adults with CP receive. Supported by data from our Adult Wellbeing and Chronic Pain study, this initiative has narrowed it first efforts to uniformly assess pain in each clinic visit for adults with CP. In addition to support from our ongoing study, a recent MyCP focus group with several adults with CP helped shape initial assessments of pain used by the participating clinicians.

Dr. Gannotti is a professor of physical therapy at the University of Hartford and a PT affiliated with Shriners’ Hospital of Springfield and co-leads the adult study group of the CP Research Network. Dr. Noritz is the Director of the Complex Care program at Nationwide Children’s Hospital and an adult internist who treats adults with CP. Doctors Gannotti and Noritz will present for approximately 25 minutes before opening the webinar to questions and answers. Community members who wish to participate in the webinar can sign up on CPRN or to receive an email with a link to the recording after the webinar.