About Melissa

Melissa is a licensed attorney and the co-author of “Afraid of the Doctor: Every Parent’s Guide to Preventing and Managing Medical Trauma,” the first book to guide and support parents regarding medical anxiety and trauma. She is also the founder and past president of Project Alive and a sought after speaker on rare disease, trauma, and advocacy. She currently consults on clinical trial design and patient outcome measures at Doulots, in addition to serving as a Patient Representative to the Food and Drug Administration (FDA) and on the Family Advisory Council of Vanderbilt Children’s Hospital.

Her youngest son being diagnosed with the rare disease Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II) in 2009 deepened her reliance on God’s sovereignty and faithfulness in her life. None of us knows the number of our days, so she felt called to serve the Hunter Syndrome community with the skills God had given her.

During her tenure, Melissa and her team at Project Alive developed innovative and award-winning fundraising campaigns, such as a multi-episode docu-series, to support research to cure Hunter Syndrome. These campaigns significantly increased public awareness of the disease, which affects only approximately 2,000 patients worldwide, bringing their message to an audience of millions.

She has been published across a variety of formats, from publicly-focused The Huffington Post, Scary Mommy, and Love What Matters to rare disease/chronic illness publications like The Mighty, Rare Disease Report, and PharmaPhorum, to medical journals such as Metabolic Genetics and Metabolism and BMC Medicine.

She received the Rare Champion of Hope Award from Global Genes and the Directors’ Award from the National MPS Society for her work in advocacy in the rare disease community. She is passionate about patient engagement throughout the drug development process, having participated with her son in a clinical trial since 2010, having served on the first Patient Engagement Collaborative with FDA/CTTI, and having served on two international consensus conference panels recommending clinical research endpoints and measures for the mucopolysaccharide disorders.

Melissa has also worked as a health care attorney and an adjunct professor of legal writing and healthcare regulatory law and currently contracts on independent investigations of allegations of abuse in faith settings.

You can connect with her on Medium, Facebook, Twitter, and Instagram or through the Connect page.

Available webinars featuring Melissa:

Recent podcasts featuring Melissa:

Recent peer-reviewed publications from Melissa:

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