welcome to DuchenneXchange

- a positively charged Duchenne muscular dystrophy community.
  • join today!
rareBlog

F-Words: Videos From FUTURES

F-Words: Videos From FUTURES

The F-Words of Duchenne

CureDuchenne, adopted a new framework for helping patients, families, and caregivers understand the complexities of Duchenne; F-Words. First conceptualized in a groundbreaking study to convey issues faced by children with disabilities, F-Words helps connect best practices across research, treatment and family life. This year, CureDuchenne’s national conference, FUTURES, focused on these F-Words to give our community the tools needed to obtain the best possible outcomes for Duchenne patients and families.

Bringing the F-Words to Life

An introduction to the F-Words including how and why each F-word is so important to kids living with Duchenne, their families, and the people who work with them to promote their development. The presenters also share examples of how children, parents, and clinicians are talking about and applying the F-words.

Speakers:

  • Dr. Peter Rosenbaum
  • Rachel Teplicky

Function

By advancing the patient’s ability to function, we’re able to help improve their quality of life and slow or even stave off progression of the disease. The panel discusses how advancements in science and medicine can help to improve patients’ daily function and shares key insight about:

  • Using up-to-date standards of care to support patients.
  • Finding the silver linings in Duchenne.
  • Understanding the effectiveness of a comprehensive healthcare team.

Panel Members:

Fun

Fun is characterized by an individual’s preferences. Identifying a source of joy a way to experience it is key to healthy development. Participation in recreational activities can boost confidence and increase a person’s overall sense of achievement. Members of the panel discuss:

  • Ways to access the environment
  • Opportunities for independent functioning
  • How to find your passion
  • Thinking outside the box

Panel Members:

  • Armando Ornelas
  • Austin Edenfield
  • Melissa McIntyre
  • Tanja Kari
  • Dr. Jeffrey Rosenbluth

Fitness

The emotional burden on families of individuals living with Duchenne is often under-addressed. When we hear the word fitness, we immediately think about physical fitness, but there’s mental fitness as well. Panelists share ideas you can use to develop better mental fitness.

  • Family focused activities that support social and emotional well-being
  • Behavior management techniques
  • Stretching activities for caregivers
  • Supporting siblings

Panel Members:

  • Dr. Tom McNalley
  • Dr. Missy Dixon

Family

By supporting the family unit, we can improve overall quality of life and foster a ‘never give up’ mindset. Members of the panel discuss and share resources to help families defy typical expectations.

  • Navigate the stages of grief including anticipatory grief
  • Access resources for medical care and equipment
  • Plan for the future: college, career and beyond
  • Learn how to not let Duchenne define who you are
  • Obtain support with decision making

Panel Members:

  • Dr. Virginia Kimonis
  • Lauren Morgenroth
  • Ashley Yee
  • Laurie Miller
  • Leona Filis
  • Kelly Maynard
  • Marissa Penrod

Friends

When it comes to friends, it’s about quality over quantity. Peer relationships are an important component of social development. Engaging in activities with friends promotes self-advocacy and increases self-esteem. The panel discusses ways for the community to:

  • Promote inclusion
  • Focus on abilities rather than disabilities
  • Optimize everyday, naturally developing social situations
  • Get involved
  • Visualize limitless opportunities

Panel Members:

Future – A Message of Hope

While families of loved ones living with Duchenne strive to live in the moment, it’s important to recognize a future.

CureDuchenne Founders, Paul and Debra Miller, share a Message of Hope to close out the 2019 FUTURES conference.

Save the Date

Join us! FUTURES will take place October 9-11, 2020, at the Gaylord Opryland Resort & Convention Center in Nashville, TN. Visit the FUTURES page on CureDuchenne’s website to stay up to date on all things FUTURES.

For more information about the F-Words, including examples of how parents, youth with disabilities, and clinicians are talking about and applying the F-words, please visit the F-Words Knowledge Hub on the CanChild website.