New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

Three headshots of Cerebral Palsy researchers Aravamuthan, Kruer and Gross

CPRN Investigators To Speak at NIH Cerebral Palsy Workshop

The banner for the NIH meeting on the state of cerebral palsy research with a graphic of a brainThe National Institutes of Health (NIH) are hosting a virtual public workshop on the state of cerebral palsy (CP) research starting next Wednesday, August 17 and August 18 that features three investigators from the CP Research Network. The meeting has been organized in response to Congressional requests to provide an update on the NIH Strategic Plan for Cerebral Palsy which was published in 2017 following two CP workshops held in 2014 and 2016. The organizers describe the purpose of the meeting as “to provide a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the Strategic Plan.” The CP Research Network encourages interested members of our community to register and join the online meeting.

The meeting is organized to follow the three priorities of the strategic plan starting with basic and translational research, and then clinical research and ending with workforce development. Drs Aravamuthan and Kruer, funded by NIH for their work in CP, will provide updates on their research progress on Day 1. Both are movement disorders neurologists with Dr. Aravamuthan specializing in dystonia in CP and Dr. Kruer on the genetic causes of CP. CP Research Network Chief Executive, Paul Gross, will speak on the use of CP Registries in research on Day 2. Each day will include between 40 and 80 minutes of discussion moderated by NIH staff. This meeting will include discussions of research progress and needs across the lifespan from neonatal development to adults with CP.

MyCP Webinar: What is CPChecklist?

Unni G. Narayanan, MBBS, M.Sc., FRCS(C). A headshot of a broadly smiling man with short silver hair wearing a dark suit.

Dr. Unni Narayanan has created two leading outcome measures for children with ambulatory and non ambulatory cerebral palsy — the Gait Outcomes Assessment List (GOAL) and Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).

Dr. Unni Narayanan, a pediatric orthopedic surgeon and outcomes researcher, will share his vision for helping parents manage the health outcomes for children with severe (non-ambulatory) CP which is called CPCHECKlist©. The webinar will take place on Monday, May 16 at 8 PM ET and parents, caregivers or clinicians should register in advance to receive an invitation. Dr. Narayanan is the creator of the CPCHILD which is the leading outcome measure for health-related quality of life for children with severe CP.

Cerebral Palsy Co-morbidities and a Health Tech Evaluation Checklist (CPCHECKlist©) is a new parent-reported list of specific health items and co-morbidities, commonly experienced by children with severe cerebral palsy (CP) and CP-like conditions. In addition to reporting the presence and perceived severity of each health issue, the parent/caregiver also indicates which of these they wish to have addressed at any given clinical encounter. The CPCHECKList includes a section on the use of health-technologies. The CPCHECKlist is intended to serve as a companion health module of the CPCHILD questionnaire or as a stand-alone health/comorbidity index to guide clinical decision-making or to quantify the health status of a child with severe CP in a standardized, comprehensive way for research and clinical management.

Please join us to learn about this important new tool which will help parents manage the care of their children. Dr. Narayanan will be available for live Q&A directly following this presentation. MyCP Webinar Series registrants will receive an email with login details and a recording will be posted within 24 hours.

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.

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.
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!

 

 

 

 

October 6 is World CP Day - Millioins of Reasons to Spread the Word

CP Research Network Featured at AACPDM

The Cerebral Palsy Research Network was invited alongside of the National Institutes of Health (NIH), the Patient Centered Outcomes Research Institute (PCORI), and C-Progress to teach early-stage investigators how to establish a successful research program at their institution during the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The nine-hour pre-conference tutorial featured presentations from each of these research and funding organizations to emphasize key steps for an investigator to get funding. The CP Research Network is differentiated from its co-presenters by being an organization that facilitates and conducts research.

In addition to presenting the network’s programs, registries, and tools, CEO Paul Gross held a breakout session for Q&A with interested attendees. “It was an honor to present our mission and vision alongside the largest public funders for research – NIH and PCORI,” said Gross. “The attendees also heard from Dr. Michael Kruer about his experience working with the CP Research Network to gain $3M in funding from NIH for his genetic causes of CP study.”

This pre-conference session fell on October 6 – World CP Day – when the CP Research Network Board of Directors has offered to match donations two-fold! World CP Day creates awareness about CP and much needed research around the globe. We are excited to be part of accelerating that research by educating new investigators to the field.

A green page banner with a headshot of Dr. Wade Shrader. A smiling man with short brown hair and beard wearing a dark suit.

Webinar on Hip Surveillance and CP

Dr. Wade Shrader of Nemours/AI duPoint, smiling in a blue suit, is an orthopedic surgeon who leads the CP program at Nemours

Dr. Shrader, an orthopedic surgeon, leads the hip surveillance initiative for the CP Research Network.

After taking a break during the last month of summer, our MyCP webinar series will resume on Wednesday, September 29 at 8 pm ET with a presentation on our hip research program. Hip pain is the most frequent cause of pain in children with cerebral palsy and can cause problems with mobility and range of motion. We have begun a hip surveillance program at our the CP Research Network centers to proactively address this issue—a very challenging task to undertake. Our upcoming webinar will feature Dr. Wade Shrader, a pediatric orthopedic surgeon and Division Chief of Cerebral Palsy at Nemours/AI duPont Hospital in Wilmington, DE who leads this effort for the network. He is also the parent of four children, two of whom are adults with CP.

In order to protect the hips of children with CP, the American Academy for Cerebral Palsy and Development Medicine (AACPDM) released an updated “care pathway” recommending the frequency and techniques for monitoring the hip health of children with CP in June 2018. Care pathways combine the latest evidence-based medicine and expert opinion to provide guidance on how to treat complex conditions. Dr. Shrader will discuss the anatomy of childrens’ hips, the impact of CP, the importance of monitoring hips, and how parents and caregivers can advocate for their child’s hip health.

“I know first-hand as a Dad how tough recovery from hip reconstruction surgery can be, “ said Dr. Shrader. “I’m looking forward to talking with the CPRN community about hip issues in Cerebral Palsy, and to give my perspective as both a pediatric orthopedic surgeon and a family member.”

Community members and clinicians interested in the webinar can sign up on cprn.org. MyCP members and series registrants will receive the Zoom link automatically prior to the webinar. Join us!

A scene from Hawaii with two palm trees standing in a lush green field with the ocean beyond and a perfect rainbow behind them.

Caregiver Mental Health: The Importance of You

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do.” — Eleanor Roosevelt

Caregivers often put their entire heart and soul into the care they give others. For most being a caregiver was never a choice, more so a job taken on with determination and courage. Taking care of any child requires time, patience, understanding, love, and an immense amount work. When adding a child with a disability into the equation these requirements are greater. As a caregiver, it is important to take time for self-care. When caring for others it is important that you also take care of yourself.

A lush, living wall of greenery with neon sign that says "breathe" in script with a pale pink written at a 45 degree angle

Focusing on your breathing, an essential step in meditation, is a great way to calm your mind.

Parents/Caregivers face uncertainty and anxiety particularly as they adjust to their new caregiving roles. Arranging healthcare providers, keeping up with day-to-day needs, and making major medical decisions are just a few areas of concern ]caregivers have. All these tasks, and more, require a great deal of time and patience. Unfortunately, many caregivers get lost in the process.

Some parents find the needs of the child so overwhelming that they neglect their own health, either because it seems insignificant or because it is too costly to eat well and get proper rest and respite from caregiving responsibilities.
Freeman Miller, M.D.
Pediatric Orthopedic Surgeon

Therefore, it is so important as a caregiver to identify symptoms of ongoing stress that may lead to anxiety or depression. Taking time for self-care and seeking professional guidance and counseling can mitigate and prevent caregiver burnout.

What do anxiety symptoms look like for caregivers? (ADAA, 2020)

  • Constant fearfulness, worry or impending doom and excessive sweating
  • Trouble eating or eating too much
  • Shortness of breath that keeps coming back
  • Sleep problems and irritability
  • Heart racing or beating hard in the chest

What do depression symptoms look like for caregivers? (ADAA, 2020) Depression for anyone can vary in symptoms. When looking at symptoms directly related to caregivers here are some things to consider:

  • Avoiding pleasurable or meaningful activities because you feel guilty about taking time off from caretaking
  • Repetitive nightmares or intrusive thoughts about the patient/loved one, including the diagnosis, treatments, or future prognosis
  • Inability to sleep (with falling asleep or sleeping too much)
  • Feelings of exhaustion, severe tiredness
  • Feelings of tension and chronic irritability
  • Inability to concentrate or remember details
  • Anxiety attacks about not properly following the medical regimen
  • Inability to talk to others about your experience as a caretaker
  • Anticipatory anxiety about future treatments for the patient/loved one
  • Thoughts of suicide because you feel so overwhelmed, worthless, or inadequate

A lush, living wall of greenery with neon sign that says "and breathe" in script with a pale pink written at a 45 degree angle

Focusing on breath going in and out can help bring about a more calm state.


Practical self-care tips:

Self-care encompasses many different things-some that many may have not considered. It can be a nice bath, or a hot shower, a walk around the neighborhood alone, or even a glass of their favorite beverage. If the activity is done with intention and is enjoyable it can be a form of self-care. Eating well and getting good sleep whenever possible can help prevent periods of burnout and severe drops in mood (Marilynn, 2018).

Caregivers are hard on themselves; they have a huge job to do. Sometimes the inner voice that whispers to always ‘do better’ needs to be muted. The self-critical voice has to be stopped for a louder self-compassionate one to emerge (Marlynn, 2018).

Another thing great for relaxation and self-care practices are breathing exercises (Marlynn, 2018). Deep breathing techniques done for only 5-10 minutes a day can help recenter the mind. Accompany these exercises with positive affirmations and conscious instruction to get the best results.

Affirmations can start with ‘I am’ and include statements like:

I am enough. I am worthy. I am a good caregiver. I am a great parent. I am capable.

Instructions that you speak aloud to yourself can look like:

I breathe in calm and relaxing energy.

I pause to let the quite energy to relax my body.

I breathe out and release any anxious or tense energy.

*Breathing exercises should never be painful or uncomfortable. Remember to always only do what is comfortable for you and modify exercises it to better suit your individual needs.

Other relaxation exercises can include yoga, tai chi, guided meditations, hypnosis, and progressive muscle relaxation. We live in a world where the internet offers plentiful resources where we can find a lot of information. Use the internet to help you find local programming or relaxation tools/apps or, seek the support of a licensed counselor/physician

Social support is also another important part of self-care. Caregivers do not have to take on everything alone; try and connect with people who are willing to help and support you. Take time to spend a day with friends. Join a support group whether it be online or through a community program. The Cerebral Palsy Research Network has an online forum with groups spanning many different topics.

It is important to realize when you or someone you know needs help outside of family support. Talk to a healthcare provider if you are struggling. Asking for help is okay! Remember to take care of others properly you must take care of yourself!

Friendship Line: 800-971-0016

National Suicide Prevention Lifeline: 800-273-8255 (TALK)

SAMHSA: 800-662-4357 (HELP)

Samaritans: 877-870-4673 (HOPE) (call or text)

Crisis Text Line: Text “HOME” to 741741

Veterans Crisis Line: 800-273-8255 (press 1) or Text 838255

References

Caregiver mental Health: Anxiety and Depression Association of America, ADAA. Caregiver Mental Health | Anxiety and Depression Association of America, ADAA. (n.d.). https://adaa.org/find-help/by-demographics/caregivers.

Marlynn Wei, M. D. (2018, October 17). Self-care for the caregiver. Harvard Health. https://www.health.harvard.edu/blog/self-care-for-the-caregiver-2018101715003.

Miller, F., & Bachrach, S. J. (2017). Cerebral palsy: a complete guide for caregiving (3rd ed.). Johns Hopkins University Press.

Stiles, K. (2021, April 23). Depression hotline numbers. Psych Central. https://psychcentral.com/depression/depression-hotline-numbers#hotline-numbers.

The footer from the CP Research Network website on a dark green background, with a pink button indicating ‘Edit Notifications’.

Personalize Your Cerebral Palsy News

We have added a simple way for you to personalize your cerebral palsy news from cprn.org. We post information – educational information, research news, CP daily living experiences and community “CP stories” several times a month on our website.

A segment of a dialog box shows how users can choose which categories they receive email notifications for

The My Notifications page allows you fine grained control over the emails you receive from the CP Research Network.

There are three ways to get these updates from cprn.org:
  1. Any time you may visit our blog at https://cprn.org/blog
  2. Subscribe to our alerts and receive an immediate email for every new post
  3. Join the MyCP community platform and customize your updates from us. MyCP also gives you the opportunity to contribute to research, engage with peers, clinicians and researchers on our forum, and receive customized reports and resources based on your experiences with CP.

By joining MyCP you can customize your CP Research Network emails by choosing the categories or authors of most interest to you. Do you want to read about our latest advances in CP research – just check the CPRN Studies category! Want to learn how we can keep you healthy – just select “Wellbeing.” Interested in practical tips from experiences living with cerebral palsy – “CP Daily Living” is the topic for you; just want info about adults with CP – choose “adults”.

Join MyCP to personalize your content from the CP Research Network today! Or if you are already a member, go personalize your content.