Volunteer for a project with no expectation of immediate remuneration. I once volunteered to perform regulatory work and competitive intelligence for the investment arm of my previous company. Later, I not only received a promotion, but was asked to work for them full-time in due diligence — a satisfying career I had for over a decade.
As part of my series about “individuals and organizations making an important social impact,” I had the pleasure of interviewing Dr. Raymond A. Huml, from Syneos Health.
Dr. Raymond A. Huml, a veterinarian by training, is a ~35-year veteran of the healthcare and biopharmaceutical industries. Ray is Vice President of Medical and Scientific Management at Syneos Health, where he serves as Head of the Rare Disease Consortium and Executive Sponsor of the People with Disabilities Employee Resource Group. He has two children afflicted with facioscapulohumeral muscular dystrophy (FSHD), which drives his passion for helping sponsors develop new candidate therapies for rare diseases.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
Sure! Thanks for having me. I did not take a classical career path into industry. I started off pursuing a career in wildlife management, moved to domestic and exotic animal medicine and surgery, and ended up in the contract research organization industry. Here, I helped evaluate biopharmaceutical products for potential capital investment, and later helped develop novel strategies to get drugs approved. After my kids were diagnosed with FSHD, I learned everything I could about the disease. I also published many articles, and more recently books, to help others understand the drug development paradigm. My kids have also embraced this concept of helping others and we have all co-authored multiple publications. I personally love the new science and fast pace of clinical drug development. I now leverage all of my biopharmaceutical investing and drug development experience for the benefit of patients with rare diseases.
Can you share the most interesting story that happened to you since you began leading your company or organization?
As one of my first projects at Syneos Health, I was invited to produce a video to educate colleagues about the importance of including the patient voice in rare disease drug development. I enlisted the aid of my daughter, who is afflicted with FSHD, and the FSHD Society. Producing the video was a fascinating project, and our CEO, Alistair Macdonald, recognized these efforts in Syneos Health’s Spotlight Recognition Program.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I worked for over 27 years at my previous employer. Once, in front of my colleagues, I was extremely exhausted after a long work week, I introduced myself as working for the prior company. I think it was related to a “loop tape” mentality. I immediately caught the mistake and apologized, but not before taking a little ribbing from my new colleagues.
Can you describe how you or your organization is making a significant social impact?
I became seriously interested in rare diseases when my daughter, Meredith, was diagnosed with FSHD. While at my previous employer, I had the opportunity to work on developing solutions for persons with rare diseases. This included helping the Muscular Dystrophy Association (MDA) with its neuromuscular data hub, writing peer-reviewed articles and, later, a book on all types of muscular dystrophy. I enlisted the aid of my children’s caregivers — including physicians and therapists –
who contributed chapters and brought the book to fruition. I also worked on Requests for Proposals — where pharma companies ask for outsourcing suppliers to pitch their services for specific projects. These gave me a lot of experience working in the rare disease space. Later, my daughter Meredith and I co-founded the North Carolina Chapter of the FSHD Society, which Meredith now leads.
As Head of the Rare Disease Consortium at Syneos Health, I work with many folks who have rare diseases, many life-shortening and some life threatening. Almost 1 in 10 people in the US have a rare disease. Only about 5–10% of the 7,000–8,000 rare diseases have a disease modifying treatment. This leaves many of those affected with disability that may be visible (such as use of a prosthetic or wheelchair) or invisible (such as anxiety and depression). To help, our company enabled me to become an Executive Sponsor of a new employee resource group (ERG), the People with Disabilities ERG. This relatively newly created ERG is growing steadily and we aim to decrease the stigma associated with disabilities, solve business problems and create community.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
Because I am very transparent about my family’s situation with FSHD, multiple colleagues have come to me to share a rare disease story — whether as a patient or a caregiver. Some have shared with me their coping mechanisms; others have described their faith story. For some, it is the first time doing this. It helps to know someone is listening and is supportive and I hope I can make a small difference. I also am grateful to understand more about the patient story for a particular disease, help find a way forward for sponsors of candidate therapies (usually via a clinical trial), and then work on this study at Syneos Health. I am rooting for the product the whole time while it is in clinical development — hoping that it may one day represent a cure or helps reduce the severity of the disease in some fashion.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Yes! There are many things! First, I would like to see greater financial incentives for sponsors of rare disease candidate therapies. The Orphan Drug Act of 1983 has led to great progress, but I think it needs to be updated and we need to provide greater incentives to help more companies develop more rare and orphan therapies. Second, because collectively rare diseases are not uncommon — with 1 in 10 persons in the US having a rare disease — we need to better incorporate these folks into the work force. In our current situation with the pandemic, there is a shortage of scientists, and many positions could be home-based, making it easier for those with disabilities to contribute. Third, we need to better incorporate the patient voice into the drug development process. How many companies are you aware of that do not include the end user in their development life cycle? We, as part of the drug development process are improving, but we can do much better!
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership means guiding a person or a group of people to influence others. I’m a fan of servant leadership, meaning supporting and training folks to gradually take over your job responsibilities. When I served as a fisheries officer in the US Peace Corps in Ghana, as an example, I worked for a large British irrigation company. We trained our Ghanaian counterparts for our own roles, sometimes for more than a year, before giving our job responsibilities to them.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
1) Identify a mentor. No one can navigate all situations without help from some who has “been there”.
2) Understand what your compensation package is — not just your salary (many folks negotiate only considering their salary; but the entire compensation package is more important). This might include benefits such as personal development, medical, dental and vision benefits, in addition to stock options, and time off.
3) Better understand the metrics you will be evaluated on during the performance review process (and always define expectations up front and in writing).
4) Work with others on a thought leadership piece. Collaboration is good for you, your company and your personal “brand”; it helps to publish!
5) Volunteer for a project with no expectation of immediate remuneration. I once volunteered to perform regulatory work and competitive intelligence for the investment arm of my previous company. Later, I not only received a promotion, but was asked to work for them full-time in due diligence — a satisfying career I had for over a decade.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I wouldn’t make such a grand claim, but would be delighted if I could help increase inclusion, equity and diversity. I agree with Martin Luther King when he said, “I look to a day when people will not be judged by the color of their skin, but by the content of their character.” I would broaden this important concept a little to include other groups, such as people with disabilities, who are near and dear to my heart.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“A good name is better than riches.” I have made many decisions in my life that have not been very lucrative. Examples are serving in the US Peace Corps and taking out 10-year loans for my undergraduate and veterinary medical education. Yet, the outcomes of these efforts have been very positive, setting the foundation for my current career. I hope that I have indeed earned a good name among my colleagues both at work and within the rare disease community.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch, and why? He or she might just see this, especially if we tag them. 🙂
Hands down — Rick Warren. He was once quoted as saying, “A lie doesn’t become truth, wrong doesn’t become right, and evil doesn’t become good, just because it’s accepted by a majority.”
How can our readers follow you on social media?
I have a LinkedIn account and post a monthly blog. I would welcome the chance for online conversations with your readers.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Raymond Huml of Syneos Health Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.