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:

• The launch of our new website that combines the shared experiences of CP Daily Living and MyCP, with the educational value of the CP Toolkit and Wellbeing Guide. It also offers details about our research and quality improvement programs.
• Twelve webinars featuring clinician and research leaders from our network highlighting the significance of the work that we are embarking on to improve outcomes in CP.
• The pilot of a lifelong wellness program in partnership with the Centers for Disease Control and Prevention and the University of Alabama focused on mindfulness, exercise and nutrition for adults with cerebral palsy.
• The launch of a free, virtual adaptive fitness program for members of our MyCP community in partnership with Staying Driven and subsequent sponsorship for this program by Neurocrine Biosciences.

 

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:

• The launch and significant enrollment of participants in our genetic causes of CP study headed by Dr. Michael Kruer of Phoenix Children’s Hospital.
• The presentation of preliminary findings from our adult wellbeing study and our pain assessment quality improvement initiative. Both of these studies are ongoing.
• Submission of two new cerebral palsy study applications to the National Institutes of Health (NIH)
• The conclusion and results of two of our studies:
  1. Research CP Dystonia Edition: A community driven research agenda resulting in the top 10 research areas for dystonia in CP.
  2. Speech and Language Predictors of Participation for Children with CP
• The launch of studies in each of our four treatment improvement areas including adult pain assessment, dystonia diagnosis, hip surveillance and intrathecal baclofen pump infection reduction.
• One new publication, acceptance of two new to-be-published manuscripts, several presentations at society meetings including one top 20 abstract selection for our dystonia research agenda and an associated Outstanding Junior Member award for Dr. Laura Gilbert at the Child Neurology Society.

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:

• Good: Sign up for email alerts.
• Better: Engage in our MyCP webinar and wellness programs to stay informed and healthy.
• Best: Join MyCP and get customized email alerts and personalized content offerings.

All the best to you and the entire CP community for 2022!