Cure JM Foundation 2018 National Fundraiser

Newly Diagnosed Families

Newly Diagnosed Families in AudienceThis session was built for the newly diagnosed family. Topics included:

  • JM basics
  • Common medications
  • Common treatments
  • Sun protection
  • Partnering with your medical team
  • Keeping track of medical records
  • Preparing for doctors’ visits, seeking support

“As a newly diagnosed family for a child with JM, we can feel overwhelmed and isolated at times. That’s why it was so amazing for us to meet other families we could truly relate to with our shared experience,” recounted Luke Ryan, who attended the session with his wife, Liz.

“We loved having the support of the JM community and talking with some of the best minds in JM research and treatment. The doctors in our session listened to us and offered advice to our concerns and helped us plan for the future. As we’ve adjusted to our new normal, we hold our heads high knowing that we’re only a phone call away from our new family friends in this shared journey. We’re going to do a lot of good together.”

Dr. Ann Reed is one of those JM researchers. She helped to lead the session and thinks there is real value in the ability for the newly diagnosed to “ask questions and talk about concerns in a relaxed setting.”