What does STRONG stand for?
STRengthening in ONcoloGy. The STRONG name reflects our goal to connect your child to resources and help support their cognitive and physical health during and after treatment. Our STRONG team works closely with your Johns Hopkins Medicine oncology team to provide care.
Will this program cost us any money?
No. There will be no cost to you or your insurance for participating in STRONG or for the services offered through the program.
What does participation look like?
We offer many services as part of STRONG, and we believe that participating from the beginning can help your child's progress. However, you are always in control of your child's activities. We understand that your child may have good and not-as-good days, or they may prefer not to participate in a particular activity. This is OK!
STRONG provides the flexibility and guidance for you to decide what makes sense for you and your child. We will work with you to determine the right amount of activity for your child on any given day. We believe that even a small amount of activity will be helpful in the long run.
What parts of STRONG are research?
There are two aspects of STRONG that are research.
- At this time, we are providing the app-based brain games as part of a research study.
- We would like to use information from the medical records (from both Kennedy Krieger and Johns Hopkins) of STRONG patients to learn about what helps patients the most.
Our team will discuss this research with you in detail and ask if you and your child would like to sign the consent form to participate in the research. Your child will only be included in this research if you sign the consent forms.
Will we be provided with equipment or will we have to purchase our own?
Families will be provided with the equipment needed for STRONG activities. We do not want you to have to buy any equipment for STRONG. Please let us know if you need something for STRONG that you do not have.
Will there be extra appointments added to my child’s already busy schedule?
We want to keep in touch and help your child be successful. We recognize that your schedule is busy, and our goal is to make it easy to fit STRONG into your life. The STRONG team can be flexible—we can discuss options for meeting during your child’s Johns Hopkins appointments, Kennedy Krieger appointments, or talking by phone or video call. You are in control of scheduling.
Must my child have a Kennedy Krieger MyChart account if he/she already has a Johns Hopkins MyChart account?
Yes. Kennedy Krieger and Johns Hopkins are separate hospitals that work closely together. We would like to be able to communicate with you through Kennedy Krieger MyChart. Our nurse navigator can help you register for Kennedy Krieger MyChart and link the account with your Johns Hopkins MyChart account.
Whom do we contact when we have a question?
You may reach out to the STRONG nurse navigator (Lisa Wetzelberger) at any time with questions. You can contact Lisa through the STRONG email (STRONGProgram@KennedyKrieger.org).