The CP Research Network Wellbeing Programs

The CP Research Network was founded with a commitment to the health and wellbeing of people with cerebral palsy and their caregivers.  From the Wellbeing Guide to our focus on improving health outcomes, health and wellbeing has played a central role in our programming.  With the evidence that has been generated about the importance of physical activity for our community, finding ways to support that activity has been an increasing focus for the network.  In an ideal world, we would have a combination of adaptive fitness programs across the country that people can access in their locale to virtual programs that can be enjoyed by anyone with an internet connection.

We currently have three programs that are in various stages of development BFit, MENTOR and Staying Driven.

Staying Driven Fitness Classes for Teens and Adults sponsored by the CP Research Network

Program overview: For teens and adults, we offer a free MyCP membership to Staying Driven virtual fitness classes.  Staying Driven LLC is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach.  An adult with CP and a former Crossfit trainer and gym owner, she shifted her business with the pandemic to virtual classes for people with disabilities via Zoom.  She and her staff of adaptive fitness trainers run multiple classes a week for people with disabilities.  The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge.  Interested members of the community can read the requirements below.

Staying Driven Adaptive FitnessWe are offering the Staying Driven fitness program to any member of the MyCP community that is 13 years old or older.  Classes will be offered for two hours per week — on Tuesday evening at 7 pm ET and Saturday morning at noon ET.  To be eligible, you need to:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Read and sign the waivers for Staying Driven and the CP Research Network.
  4. Sign up for a free Zoom account for class registration.
  5. Go to the MyCP Fitness Program to sign-up and fill in the form to receive your invitation (pending announcement).

How it works

MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom fitness class with Staying Driven LLC.  The participant uses the link at the specified times — Saturdays at noon ET or Tuesdays at 7 pm ET — to join the class.  Steph, or one of her other coaches, will run the class.

What should you bring?

A water bottle, a hand towel and a positive attitude.

What about weights?

Classes are adapted for people of all ages and abilities.  Steph will encourage you to gather items from around your house or apartment to participate.  If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.

What if I cannot make these times or I want to work out more often?  Do I need a note from my doctor?

The MyCP Fitness program only supports these two days and times.  Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.  A doctor’s approval is up to your discretion.  Think of it as joining a gym — the gym doesn’t require a note from the doctor but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.

MENTOR: Mindfulness, Exercise, Nutrition TOptimize Recovery Pilot Program for Adults

Program Overview: The CP Research Network partnered with the National Center for Health, Physical Activity and Disability (NCHPAD) to offer a free mindfulness, exercise and nutrition program called MENTOR.  The initial pilot program had 10 members of the MyCP community participate in an 8 week, 40 hour program to develop knowledge, improved health and sustainable skills. It is a new program and was originally designed as an in person, on site program at one of several rehabilitation centers (Shirley Ryan Ability Lab, Shephard, Spaulding, etc.) NCHPAD is just graduating its first class of students.The network is working to tailor the fit for this program to the unique aspects of the CP community to be offered in 2022 through MyCP and NCHPAD.

I wanted to say thank you for facilitating the opportunity to join the MENTOR program. It’s been a fantastic 8 weeks and I have gained so much valuable information that I otherwise would have had a difficult time accessing (or even knowing where to start looking for help). I’m much better equipped to maintain my health now, and push through what life throws my way with the newly acquired experience and knowledge…
Nicole L.
MENTOR pilot participant

It is important to note that the CP Research Network version of this program is a pilot (a test) of what is already a new program under development. It has been designed for people with disabilities but not specifically for people with CP. We expect to make adaptions to the program. It is intended to be interactive and dynamically adapted for the participants. In addition to the trained coaches from MENTOR, Dr. Mary Gannotti, a physical therapist who specializes in physical activity for adults with CP, will be involved in shaping the pilot as we go. Your feedback will be critical to making the program a success.

Program Start: March 29, 2021 (but we may adjust into April)

Timeframe: Eight (8) weeks

Weekly time commitment: Five (5) hours, one hour per day

Breakdown: Two (2) hours exercise, one (1) hour nutrition, one (1) mindfulness, one (1) health coaching (usually Fridays).

Format: Group classes – Five (5) to six (6) people, fixed weekly schedule to be planned between 9 am – 5 pm CT, some one-on-one coaching as needed.

First week is an introduction to program and each hour session that week sets the context for the eight (8) week training.

BFit Program for Children

Program Overview: For children, we partnered with Shriners to develop, promote and spread the BFit program.  BFit leverages the expertise and facilities of Shriner’s Hospital’s staff and local volunteers to serve children with cerebral palsy. It is a twice-weekly, 12-week long community-based exercise program with 90-minute sessions. This program focuses on helping the individual improve function, while providing additional benefits of socialization, self esteem and participation. Each athlete is paired with one or more coaches who are undergraduate students in public health, physical therapy, premed, physical education, athletic training, or kinesiology who work with the child to tailor exercises to their current abilities. The BFit program was pioneered by leaders in physical therapy and rehabilitation at Shriner’s Springfield, MA. It is being developed in Greenville, SC for the fall of 2021.

Beginning fall of 2021 in Greenville, South Carolina we will co-sponsor a pilot program that includes a a twice-weekly 90-minute exercise program. The program is designed to help participants develop a personalized fitness routine for remaining active.