Danielle Edwards, Jett Foundation, TRNDS

Danielle Edwards BA

Community Engagement Manager, Jett Foundation

Danielle is the Community Engagement Manager at the Jett Foundation, a foundation that works with Duchenne muscular dystrophy. Danielle’s passion for advocacy is fueled by her brother Tanner, who was diagnosed with Duchenne muscular dystrophy at a young age. Over the last 18 years, the Jett foundation has raised over $16 million dollars that have been used for promising biomedical Duchenne research. The foundation has also established direct service programs, and educational activities designed to meet the needs of affected families. At the Jett Foundation, Danielle organizes the Family Workshop series, an event that brings families living with Duchennes together in a learning and supportive environment.

TRNDS Danielle Edwards Jett Foundation

TRNDS Speaker Spotlight: Danielle Edwards

Meet TRNDS speaker Danielle Edwards, Jett Foundation Community Engagement Manager. The Jett Foundation's mission is to extend and enrich the lives of those affected by Duchenne muscular dystrophy and other neuromuscular disorders.

Why are you participating in TRNDS 2019?

Edwards: As a non-profit in the rare disease space I think it’s important for pharmaceutical companies and researchers in drug development to hear from patient advocates and learn how we can help by working alongside each other and bringing the patient perspective to the table.

How is the increasing use of modern technologies changing the field of clinical research?

Edwards: Social media is truly changing the way many access clinical trials–in learning about them and participating in them. Social media groups in rare diseases are popular among patients and families who are learning about new trials, research or medical equipment opportunities (WREX arm). Trial repositories can be very complicated to understand and many families impacted are looking for support groups and answers to common questions. These groups provide the free-flowing safe space where a concerned parent can get an answer at 3pm or 3am by other parents in the same situation. First-hand input is invaluable and I think social media has been amazing at connecting Duchenne families.

Share with us some of the most exciting developments in your organization.

Edwards: In the past few months, Jett Foundation has learned that families are not receiving enough information about the disease after diagnosis. From that, we have created a Newly Diagnosed Packet for patients and families impacted by Duchenne that provides them tools and resources to help gain a better understating of the disease and help them better cope with the diagnosis. The packets include such resources as support letters from other newly diagnosed parents, clinical trial and health insurance educational guides, FAQ gene therapy sheet, Duchenne teaching guide for the classroom and more. We hope to educate and empower more patients and families with crucial information, research opportunities, and resources to help them better prepare for the journey ahead at such a scary time.

What is a critical topic you’d like to see discussed at TRNDS 2019?

Edwards: CRISPR/gene therapy – what we know, what we don’t, and what we can continue to expect in the next year.

What challenges lie ahead in the rare disease space?

Edwards: Working in a rare disease is very unique because most times we are witnessing things happen for the “first time.” I believe this causes some challenges because we are stepping into unknown territory. Here are some examples I am constantly challenged by:

  1. Drug approvals and pricing – will insurance companies cover these drugs priced in the millions?
  2. Gene therapy – frequency and dosage?
  3. Combination therapies? Will insurance choose which drug you may take or not?

Unfortunately, when a mistake is made in the rare disease treatment space, it comes at a very high cost and usually results in the patient still not being able to receive treatment whether insurance denials or clinical hold. More information and guidance about these topics could have a massive impact for the families we serve.