Melissa Hogan is president of Project Alive and a sought after speaker on rare disease issues, in addition to serving as a Patient Representative to the Food and Drug Administration (FDA). But her role as a rare disease advocate is just one of many passions of this former corporate lawyer and strategy consultant.
Her youngest son being diagnosed with the rare disease Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II) in 2009 shifted her perspective as well as her profession.
Melissa and her team at Project Alive have developed innovative and award-winning fundraising campaigns, such as a multi-episode docu-series, to support research to cure Hunter Syndrome. These campaigns have significantly increased public awareness of the disease, which affects only approximately 2,000 patients worldwide, bringing their message to an audience of millions.
She is the author of Calmer: Medical Events With Cognitively Impaired Children and 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 recently received the Directors’ Award from the National MPS Society for her work in advocacy in the rare disease community and often appears as a speaker at rare disease and pharmaceutical industry conferences throughout the year, including workshops sponsored by the FDA and NIH. She is passionate about patient engagement throughout the drug development process, having participated with her son in a clinical trial since 2010.
Melissa’s personal story of faith has become intertwined with her journey as a rare disease advocate, writer, speaker, and songwriter. Walking alongside her husband, nationally acclaimed speaker and bestselling author Chris Hogan, Melissa shares the joys and challenges of their journey of certain faith in an uncertain future through her writing, speaking, and music.
You can connect with her on Facebook, Twitter, and Instagram or through the Connect page.
The fancy stuff may be above, but the nitty gritty of me is here:
my essay application said I wanted to be a child advocacy lawyer. Three years of law school makes you a little jaded, so I emerged a corporate lawyer instead. But many years and kids later, God eventually brought my life around full circle as I now advocate for children and families affected by rare disease.
I graduated from Georgetown College in 1991 with a double major in communications and political science. My favorite professor there, the late Dr. Keon Chi, master of the cookie honor roll, taught me a key goal: “Be very, very thorough,” he would repeat, referring not just to assignments, but to life as a whole. The double major received summa cum laude was my attempt to be thorough in my preparation for a law career.
Moving away to attend the University of Pittsburgh School of Law was a decision reflecting economy and love. I had received a scholarship, but moreover, my soon to be fiancé was coaching football just outside the city. For more on him, click here.
After law school, I was blessed to have the opportunity to clerk for Judge Alice Batchelder on the U.S. Court of Appeals for the Sixth Circuit. For a year, we lived in a small town in Ohio, went running on the town square, and shoveled lots of snow.
We moved to Nashville where I started practicing law with a larger firm downtown, while we lived in a hip spot just outside the city called East Nashville. Turns out, I wasn’t that excited about buying and selling hospitals, negotiating deals, and writing sixty-page agreements. So I taught classes for a while, ran my own practice, and eventually started doing consulting work.
Consulting would soon end when our youngest son Case was diagnosed with Hunter Syndrome. But the experience and strategies of being a lawyer and consultant sure come in handy as an advocate.
Connect with me if you’re interested in me speaking at your event about alternative legal careers or other topics.
and professionals in the field of rare disease. They share their experience and strategies and it helps us all move the ball forward in our individual fields.
In 2010, I started writing two blogs when our son Case entered a clinical trial for his disease. I shared a variety of topics, from how we got a wheelchair approved by our insurance, to my perspective on the high cost of rare disease drugs, to our very personal story from four miscarriages to three boys in three years.
The drug development process is not swift. And watching boys be denied access to the clinical trial or appropriate educational services, watching companies select inappropriate criteria or measurements for clinical trials, and watching patients have little control over a system that, at least in intention, was trying to save their children, boiled a passion inside me to make a difference.
So I became more involved at the federal level by speaking at open workshops at FDA and then at conferences and events, submitting comments to FDA dockets, and eventually becoming a Patient Representative, a program that brings the patient voice into agency decision-making about drugs, biologics, and devices.
In 2014, several parents of children with Hunter Syndrome, including myself, formed a nonprofit, Project Alive, to raise funds to support gene therapy as a treatment for Hunter Syndrome, as well as raise awareness in the general public.
We’ve received celebrity support from the likes of actor and musician Jared Leto, Seattle Seahawks coach Pete Carroll, financial guru Dave Ramsey, and others, as well as raising significant sums for research. The creative idea behind Project Alive had percolated in me for several years after my son Case brought home a particular photo from his kindergarten teacher.
In 2016, we released the “Alive” lyric video and song, co-written by myself and Mark Irwin, generating over 150,000 views of the lyric video on social media, as well as an array of media stories, sharing our battle against Hunter Syndrome with the world.
In the spring of 2017, we started the launch of a mini docu-series about families facing a Hunter Syndrome diagnosis. You can watch the first few episodes at ProjectAlive.org and our family’s episode will release toward the end of the summer 2017.
Connect with me if you’re interested in me speaking at your event about advocacy or other topics.
I write indiscriminately, in almost every format, from essays to songs, (unfinished) books and television pilots, fiction short stories, medical journal articles and blog posts. (However, I’ve given up most of my legal writing, teaching that class to first year law students wore me out.)
I write because I love writing. It is one of the few ways to share our human experience and to give life to feelings and experiences as yet unspoken, even if it’s only for ourselves.
You can find my writing at the following:
Rare Disease / Pharma
Connect with me if you’re interested in me speaking at your event about writing or other topics.
scribbled in old notebooks, carved in pain on the inside of my skull.
I learned to play guitar. (Confession: I’d owned my guitar for almost 15 years and could only play Feliz Navidad for my kids until two years ago.)
God supplied just enough knowledge and skill on my part so that I would recognize Alive as a beautiful song when He poured the lyrics out of me on a late spring evening.
That was the point where I stopped casting aside the writing I’d done for years simply because I’d never declared my life’s purpose to be that of a “songwriter.”
But writing Alive turned up the volume of the jukebox in my mind, releasing a flood of melodies, even if only for my own enjoyment, but hopefully for yours as well.
Check out Alive and more of my music on the music page.
I wondered whether I would ever be a mom. I felt like a failure as a woman, as a wife, as a servant of God. What had I done that deserved for God to close my womb? Or, to give me hope only to steal it away again?
The journey from that point to being blessed with three boys in three years is a journey of God’s sovereignty and my human frailty. You can read about my motherhood journey at Our Story.
I still don’t pretend to understand why God eventually opened my womb and allowed the wombs of others, people I love dearly, to remain closed. It is indeed a broken world and hopefully on the glorious side of heaven, one day we’ll all understand it a bit better.
So I take my role as a mother as one of the most serious and weighty jobs that I have. And in our house, it’s a job that comes with a lot of dirt, sweat, laughter, and late-night conversations about what it looks like to grow into a godly man.
Mothering three boys is not for the faint of heart, so it’s a good thing I like to climb trees, camp in the woods, and help piece together unearthed bones for my son’s science project.
Connect with me if you’re interested in me speaking at your event about our journey or other topics.
and I’ve proudly watched him step out in faith to a calling that uses his gifts, helps others, and makes me smile. Chris is an author and speaker on retirement, leadership, business, and life and when he’s on the road, you might just find the boys and I at home watching him on YouTube.
What I love the most about him is his collaborative spirit. Our “individual” accomplishments are never that, they’re something we’ve worked on and brainstormed together, and with so many others. He takes the time to both appreciate the contributions of those around him and to show that appreciation. And he always remembers that I love a good day at the spa.
and that’s how I always hope to inspire people. Whether it’s about rare disease, clinical trials, social media, or my faith, I want my audience to embrace the challenge before them with passion and purpose, leaving regret at the door.
Serving as a member of the Advisory Board for the Mayo Clinic Social Media Network, the Advisory Board for Rare Disease Report, and on the Corporate Alliance and Foundation Alliance for Global Genes, I often speak about issues relevant to rare disease advocates and related topics such as clinical trials, drug development, social media, health care support, education, and advocacy.
Connect with me if you’re interested in me speaking at your event about advocacy, our journey, rare disease, clinical trials, or other topics.
Some recent speaking engagements include:
– DIA Annual Meeting: The Growth of Relational, Regulatory, and Research Equity in the Modern Patient Advocacy Group (2017)
– Patients as Partners: How Patients Are Being Involved Earlier in the Preclinical Research Process (2017)
– International Consensus Conference on Neurocognitive Endpoints in MPS Disorders (2016)
– Global Genes Patient Advocacy Summit: Effective Social Media Engagement for Your Rare Disease Community (2016)
– Patients as Partners: Patient Stories and What Influences Them to Consider Trial Enrollment (2016)
– Global Genes Patient Advocacy Summit: Drug Approvals: The Rare Journey to Approval (2015)
– NIH Development of Pediatric Ports for Intrathecal Medication Delivery Meeting (2015)
– FDA Public Workshop on Assessment of Neurocognitive Outcomes in Inborn Errors of Metabolism (2015)
– National MPS Society conference: IEP Workshop (2014)
– HAE Global Conference: An Advocate by Necessity (2014)
– Patient Focused Drug Development Public Meeting: Inborn Errors of Metabolism (2014)
– Immune Responses to Enzymes Replacement Therapies: Role of Immune Tolerance Induction (2014)
– Global Genes Patient Advocacy Summit: Conversations with the Experts – Social Media (2013)
and I guess I’ve finally graduated from begrudgingly accepting it into embracing it. As long as I have coffee, chapstick, and my phone (the platform of my Bible, notes, and connections to family and friends), I’m ready for the unpredictable. The Lord does crazy amazing things in our life when I stop being so concerned with checking things off the list.