Cerebral Palsy Research Network Blog

Archive for News – Page 3

Want to try a home wellbeing program?

We Have Ten Free Spots Available For A New Wellbeing Program!  Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle.

As we encourage our community to strive for the best possible outcomes we are delighted to partner with the National Center on Health, Physical Activity and Disability (NCHPAD) to bring its MENTOR program to the cerebral palsy community. 

MENTOR, which stands for Mindfulness, Exercise and Nutrition To Optimize Recovery, is a holistic approach is aimed at restoring, improving, and protecting health across the lifespan.

We are able to offer 10 members of CP Community the opportunity to participate in this free eight-week program throughout the months of April and May 2021.  Participants must be members of the MyCP community and 18 years or older.

During the pandemic, NCHPAD has pivoted from an onsite program for health and wellness, to virtual coaching for exercise, mindfulness and nutrition.  The MENTOR program combines adapted exercise, sport and recreation activities with practical healthy eating cooking classes and mindfulness-based stress management techniques to reduce mental health issues such as anxiety and fear.

“Our health coaches will work closely with the CP Research Network and community members to establish the most beneficial exercise, mindfulness and nutrition programs for people with CP,” says James Rimmer, PhD, Director of NCHPAD. “We are excited to partner on this pilot program with the CP Research Network.”

Participants will be provided with equipment to use at home which they will be able to keep at the end of the training. 

The program with be monitored by CP Research Network’s Mary Gannotti, PT, PhD, a professor of physical therapy at the University of Hartford and member of the network’s steering committee.

Interested members of the cerebral palsy community should send an email to mentor@cprn.org

Tune in to our next webinar — Genetic causes of cerebral palsy

We will kick off our ground-breaking “Genetic Causes of Cerebral Palsy” study with an informative MyCP webinar next Wednesday, March 10, at 8 pm EST. 

Dr. Michael Kruer, pediatric neurologist at Phoenix Children’s Hospital, studies the genetic causes of CP.

Dr. Michael Kruer, a neurogeneticist and pediatric movement disorders neurologist at Phoenix Children’s Hospital, will lead the study after receiving CPRN’s first publicly funded (NIH) grant to study the genetic causes of CP. 

Clinicians are hopeful that improved detection of a genetics origin for patients with CP will help individuals to gain treatments tailored to their unique situations faster and more efficiently. 

During the webinar, Dr Kruer will outline the function of the study as well as the types of findings that may be discovered and how those results may impact treatments. 

Three centers in the Cerebral Palsy Research Network will initially participate in the study; Phoenix Children’s Hospital, AZ, AI duPont Hospital for Children in Wilmington, DE, and Seattle Children’s Hospital, WA.  Nationwide Children’s Hospital in Columbus, OH, and Colorado Children’s in Denver, CO, have also expressed interest in participating. Other centers will be added during the course of the enrollment period that is set to end in 2023.

Dr. Kruer previously gave an overview of his research during a MyCP webinar in July 2020   Now, as he prepares to launch the study, he will share why genetics matter and detail recent findings about how genes play a role in the cause of CP. He will also outline who is eligible and how DNA samples will be collected. 

CP families receiving consultations at participating CPRN centers will be invited to enroll in whole exome sequencing analysis for the study which will examine the genetic factors between CP children and their parents. A hospital clinic visit is not necessary to enroll. Participants are required to have a diagnosis of CP. 

If you are not already signed up to view the MyCP webinar series, you can register here

Ways To Support National Cerebral Palsy Awareness Month!

As March kicks off Cerebral Palsy (CP) Awareness month and culminates in National CP Awareness Day on March 25, it gives us a great opportunity to strengthen our community and inform the general public about CP. 

Here are some ways you can support our work and the CP community: 

CP Research Network T-Shirt Store

1) Wear Green! Our community color is green so let’s make our presence known wherever we can! If you missed your chance to order last week, you can still get our shirt and support our common cause!

2) Be sure to log on to Instagram and follow us at cp_research_network. Tune in for our “Take Over Tuesdays” as CP advocates take over our account with their own unique content. Get people talking about CP using the hashtags #gogreenforcp, #researchcp, #cerebralpalsy, #cprnresearch 

3) Help us spread the word about our MyCP webinar series and save the date for Dr. Michael Kruer’s upcoming webinar on March 10 at 8 pm ET. This must-see webinar will outline the impending launch of Dr Kruer’s “Genetic Causes of Cerebral Palsy” study. Follow us on YouTube to get access to all of our MyCP webinars. 

4) Share our Facebook posts and blogs about #CPStories. Every month, we feature the stories of people in our community who are making a difference in CP research. Want to share your own story? Tell us about your experiences for future publication on the CP Research Network blog and social media! 

5) Make a direct donation to support our mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming. Your generosity helps our community thrive. 

We all have unique experiences of what CP is, what it is like living with it, and the belief that outcomes can be changed for the better through research. Let’s get out there and shout about our wonderful community!