Melissa McQueen Family
McQueen Family

Like many families, the McQueens love to travel, seek out new adventures, and spend time in nature with their children. However, 12 years ago, the family’s ordinary life took a turn, making their future uncertain. When Melissa McQueen’s youngest child was diagnosed with cardiomyopathy, it was life changing; not just for her son, but for her whole family. Cardiomyopathy is a disease of the heart muscle that makes it difficult for the heart to deliver blood to the body and can lead to heart failure. Managing her child’s chronic illness, including extensive in-patient care and an eventual heart transplant, impacted every aspect of the family’s life. The McQueens had to consider their health insurance options and who would be the full-time caregiver when determining which jobs they could consider. The family needed to relocate, uprooting their two older children as well, to be closer to the care their youngest child needed. Protecting their youngest son from potential infections post-transplant required isolating their older children during their pre-school years. Additionally, the McQueens were faced with years of special care, therapy, and services for their youngest son. Following her son’s heart transplant surgery at 8 months old, which she describes as a “gift of life,” Melissa felt inspired to work with organizations that help families like hers and strengthen the advocate’s voice in healthcare policymaking.

Melissa’s journey caring and advocating for her son led her to found Transplant Families, an organization that provides support, education, and other assistance to families whose children require lifesaving transplants. She also worked with other advocacy groups, including Mended Little Hearts, and currently supports the Children’s Cardiomyopathy Foundation (CCF), where she became a parent advocate. Melissa has lauded the CCF for their transparency in research funding and patient education, which is coordinated with clinical partners to provide a high level of support. Through the CCF, Melissa learned about the Congressionally Directed Medical Research Programs (CDMRP) and the Peer Reviewed Medical Research Program (PRMRP). The CCF nominated her to serve as a PRMRP consumer peer reviewer in 2018, and she has continued to participate in 2019 and 2021.

When Melissa first began the process of peer review, she found the complexity of the research quite daunting; however, she quickly tapped into the multiple resources available to assist peer reviewers. For example, the Scientific Review Officers were available to answer questions and clarify any issues, scientific or otherwise, to help her and the other consumer peer reviewers fully participate in the process. She further appreciated the structured and organized nature of the review process, which can be helpful for people juggling multiple priorities. Melissa said she feels like a valued member of the team and stated that, “as a consumer, it is made clear that our experience is incredibly important to the review process. It is often one of the most important factors.” During her time as a peer reviewer, Melissa has also witnessed the commitment of the scientific community to understanding cardiomyopathy and improving the lives of those affected by the disease, like her family. Melissa further expressed her appreciation for the value that CDMRP places on consumer reviewers and their experiences. “The work you do is life changing on so many levels,” she said.

Last updated Thursday, May 26, 2022