Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

Headshot of Dr. Adam Ostendorf for his webinar on cerebral palsy and epilepsy

Update on Epilepsy and Cerebral Palsy

A headshot of Adam Ostendorf, M.D. A smiling man with short brown hair wearing a black suit and red tie.

Dr. Adam Ostendorf will present the CP Research Network findings about people with CP and epilepsy.

Our April MyCP webinar, next Tuesday, April 19, at 8 pm ET, will provide an overview of our initial findings about people with epilepsy and cerebral palsy (CP). The webinar will feature Adam Ostendorf, MD, a pediatric neurologist from Nationwide Children’s Hospital, who is the principal investigator of our epilepsy research within the network. Dr. Ostendorf has used the CPRN Registry and validated outcome measures, to learn more about the quality of life for people with CP and epilepsy.

Dr. Ostendorf was funded by the Pediatric Epilepsy Research Foundation in 2018 to add epilepsy specific support into the CPRN Registry. Since that time, Nationwide and other centers with the CP Research Network, have been gathering data about the experience of children with epilepsy and CP and examining differences in treatment and outcomes for kids with epilepsy and CP versus those without CP. Dr. Ostendorf will share his findings and how these can lead to important research to improve outcomes for children with epilepsy and CP. His findings have ramifications for children and adults alike.

If you are interested in joining the webinar, you can register on our MyCP Webinar Series page. People who have registered for our whole series will receive a link to the webinar in email a few days prior. If you cannot attend live, we will post the webinar on our YouTube channel where subscribers will receive a notification that it is posted.

Dr. Aravamuthan, a doctor specializing in cerebral palsy, with dark hair back over her white lab coast smiling.

New Publication on Cerebral Palsy

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair is wearing black rimmed glasses and a white lab coat.

Dr. Aravamuthan has championed physicians sharing an etiologic diagnosis with a diagnosis of cerebral palsy.

The Cerebral Palsy (CP) Research Network congratulates investigator Bhooma Aravamuthan, MD, DPhil and her co-authors for the publication of her CP Research Network study entitled “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.” The publication, released in the journal Developmental Medicine and Child Neurology in January 2022, describes the results of her survey of community members about the importance of understanding their possible etiologies (origins) of CP. The results of the study indicate that most community members with a diagnostic preference would want to know both their CP diagnosis and any information about their potential etiologic diagnoses.

Dr. Aravamuthan has been a strong advocate for shifting the practice of clinicians that make a CP diagnosis to include information that is important to families for numerous reasons. This article concludes that physicians should change practice to include all information about etiologic diagnoses with their CP diagnosis. This may include, in some situations, stating that the etiologies of a person’s CP are not known.

“Based on survey work we have done with clinicians, many tend to provide either a diagnosis of CP, or a diagnosis describing the etiology of CP, but not both,” said Dr. Aravamuthan, a pediatric movement disorders neurologist as Washington University in St. Louis. “But this study shows that families value the services and the sense of community of having both diagnoses when available.”

The red cover of Developmental Medicine and Children Neurology journal

The full journal article is available to subscribers to DMCN. MyCP members can click on the journal cover to go to the page to view the pre-approved version of the article.

We have made the article in its pre-approved state available to members of the MyCP community. As with many academic publications, this article is not available for free for the general public but the journal allows for authors to post pre-approved versions. MyCP members can find the article in our CPRN Private Archive. Interested community members can join MyCP for free to access this article and other services such as personalized resource recommendations and free adaptive fitness programs.

Cerebral Palsy Photo Contest Winning pictures

Cerebral Palsy Awareness Day 2022

Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in five categories: creativity, diversity, participation & inclusion, perseverance, and physical activity. Each of the following submissions were selected by leading these categories in votes out of 13,383 counted:

A young girl with cerebral palsy smiles while holding the bottom of her dress above an incoming ocean tide.

Creativity Winner: Michelle Toy: Live every day like Mighty Mara!

A young boy with cerebral palsy uses his gait trainer with determination and glee

Diversity winner: Reena De Asis: Determined to thrive as he reaches out to you and lights up the room. The flames on this joyous toddler’s gait trainer are a reminder that he’s a CP warrior on fire!

A proud young woman with CP, seated in a wheelchair and wearing a blue-and-gold graduation cap and gown, receives her diploma.

Participation & Inclusion winner: Jersey Morrison: Jersey’s Graduation in 2021

A man in a wheelchair with cerebral palsy sits between hospital administrators receiving his fundraising check for $10,000.

Perseverance winner: Gary Lynn: “I have not ever let Cerebral Palsy stop me or define who I am!”

A young boy with hemiplegic cerebral palsy jumps for joy as he heads for a puddle of rain water

Physical Activity Winner: Sarah Board: Jumping for joy despite my hemiplegia!

Congratulations to each of these photographers and subjects for their selection and their prize of $100.

In addition to these winners, the staff and volunteers of the CP Research Network voted for best overall photograph in terms of what represented the CP Research Network’s values, the categories and our focus on wellbeing. The winner is:

An adaptive basketball coach in a wheelchair lifts a boy with cerebral palsy overhead in his own chair to dunk a basketball

Best Overall winner: Dawn McKeag: Slam dunk!

Congratulations to Dawn McKeag for the photo of her son Fin and the coaches their local Y for adaptive basketball and the $500 prize!

In addition to this winner, our team wanted to recognize two pictures for honorable mention:

The Shrader triplets, two of whom have cerebral palsy, at graduation

Best photo honorable mention: Carol Shrader: Triplet selfie at Benjamin’s graduation from Belhaven University!

A young man with cerebral palsy in a wheelchair focuses intensely as he aims down his drawn arrow preparing to release it

Honorable Mention: Wesley Magee-Saxton: My 22 year old son, who has CP,  has been perfecting his archery technique with a bow that his dad modified for him. He spent hours practicing and can now almost always hit the target.

Thank you to EVERYONE who participated – submissions, shares and votes. We hope that by sharing pictures and our awareness banners we helped you create awareness for CP and celebrate our vibrant community! Our board will continue to match donations this month 2:1! Wear your green proudly today!

A bar chart shows the age bands and totals for people with cerebral palsy in our national registry.

Cerebral Palsy Registry Update

Headshot of Garey Noritz, M.D. Go to Gary Noritz’s profile

Dr. Noritz, a developmental pediatrician and internal medicine physician, will provide an overview of the current CPRN cerebral palsy registry.

Next Tuesday, March 29, at 8 pm ET, Garey Noritz, MD, the principal investigator of the Cerebral Palsy Research Network’s cerebral palsy registry, will present the latest findings from our registry for our next MyCP webinar. He is a developmental pediatrician and an internal medicine physician at Nationwide Children’s Hospital who treats children and adults with CP. The presentation is open to the public and characterizes the patient population – children through adults – that are captured in our national registry. Attendees will learn how the CP Research Network registry collects data and how that data is used to accelerate research. He will also share what we have learned about the more than 5,200 patients enrolled in the registry.

The Cerebral Palsy Research Network was founded out of a need identified by the National Institutes of Health (NIH) to establish a national registry for cerebral palsy (CP). Unlike countries with socialized medicine such as Australia or Sweden, surveillance of CP at a national level in the United States is exceedingly difficult and prohibitively expensive. The CP Research Network chose to build a “clinical” registry rather than a surveillance registry with the main difference being a focus on children and adults who were treated for CP rather than only whether they were born with CP. A clinical registry is an essential tool for planning research for CP, providing preliminary data to increase research funding success, and improving the treatments and outcomes for people with the condition.

MyCP webinar subscribers will automatically receive an email with the link to the webinar. If you are interested in joining this webinar or signing up for our series, register at: https://cprn.org/mycp-webinar-series/. If you cannot make the webinar, we will post a recording on our website and on our YouTube channel.

CP Awareness Month Begins

CP Awareness Month Begins!

A young woman with cerebral palsy leans on a tree while hiking.

Come back every day to vote for YOUR favorite pictures.

Join the Cerebral Palsy (CP) Research Network in our activities to celebrate National CP Awareness month. This recognized month is a great opportunity for us to create awareness about living with CP for the general public to help fund research, support disability policies, and to promote inclusion. There is so much you can do to help the community:

  1. In February, we gathered photos for our CP Awareness photo contest. You can vote for the best picture in each of five categories on our website. We will be awarding a total of $1,000 in cash prizes to the winners on national CP Awareness Day – March 25! Go vote for your favorites – and share them on social media to get more votes.
  2. We have CP facts as Facebook banners that you can download and use to spread the word. We will be posting a CP fact every day on our Facebook and Instagram – feel free to share those!
  3. You can buy CP Research Network merchandise at our Bonfire store and wear green through the month! A portion of the proceeds is donated to our work!
  4. You can donate or start a Facebook fundraiser – our board with 2X match the donations you give or raise throughout the month of March!

Please help us in our efforts to spread awareness for cerebral palsy!

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.