Remodeling Grief: The Most Crucial Dimension

Pat Furlong, mother of two Duchenne boys and Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), shares her perspective on the ongoing grief of living with a progressive, life-limiting disease.

Published on Mar. 10, 2026

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My interactions with Pat Furlong, mother of two Duchenne boys and Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), are generally clinical in nature, focused on the latest scientific trends, pharmaceutical development programs, and FDA activities. However, Pat reminds me that PPMD is about more than just advancing science and drug development - it's about the personal journey of parents and families. The grief of receiving a Duchenne diagnosis is not a one-time event to be overcome, but an ongoing process of adjustment and remodeling as the disease progresses and new challenges emerge. Recognizing this truth is crucial for developers to build meaningful, long-term relationships with patient communities.

Why it matters

Drug development is a long, arduous journey, and being a parent of a child with Duchenne is similarly challenging. However, the patient perspective and ongoing grief of families is often overlooked or misunderstood by developers, regulators, and other stakeholders. Building robust alliances with patient communities can unlock valuable insights to improve clinical development and the regulatory process, leading to better outcomes for patients.

The details

Pat Furlong, the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), explains that the grief of receiving a Duchenne diagnosis is not a linear process with a defined endpoint. Instead, it is an ongoing remodeling of expectations, hopes, and dreams as the disease progresses and new challenges emerge. Each stage of the disease requires families to adjust, recalibrate, and renegotiate, with the underlying burden of grief never fully lifting. While advances in care and access to therapies can bring hope, they also require another round of emotional reconstruction as families grapple with what the new opportunities mean - and what they do not.

  • The article was published on March 10, 2026.

The players

Pat Furlong

The mother of two Duchenne boys and the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), an organization focused on advancing science and drug development, as well as supporting the personal journeys of parents and families.

Parent Project Muscular Dystrophy (PPMD)

A parent advocacy organization with a sophisticated understanding of what it takes to bring new therapies to market, but whose heart and soul is focused on the practical and personal aspects of living with Duchenne muscular dystrophy.

Dr. Janet Woodcock

A forward-thinking regulator who, together with PPMD, invented the concept of patient-driven FDA guidance development.

Peter J. Pitts

A former FDA Associate Commissioner, the President of the Center for Medicine in the Public Interest, and a visiting professor at the University of Paris School of Medicine.

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What they’re saying

“Duchenne is not a single loss to be mourned and then set aside. The diagnosis represents the loss of what was hoped for, planned for, assumed. Futures imagined with ease—independence, longevity, simplicity—are suddenly no longer available in the way they once were.”

— Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy (realclearhealth.com)

“Grief in Duchenne works the same way. Early on, it may center on the diagnosis itself. Later, it may be about mobility, about cardiac or respiratory function, about the growing awareness of limitations that peers do not face. At each stage, families adjust expectations, recalibrate hopes, and renegotiate dreams. The remodeling continues.”

— Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy (realclearhealth.com)

What’s next

The article does not mention any specific next steps or future newsworthy moments related to the story.

The takeaway

The ongoing grief of living with a progressive, life-limiting disease like Duchenne muscular dystrophy is often misunderstood or overlooked by developers, regulators, and other stakeholders. Recognizing the remodeling nature of this grief and building meaningful, long-term relationships with patient communities can unlock valuable insights to improve clinical development, the regulatory process, and ultimately, patient outcomes.