January 27, 2022
Project Alive, a Hunter syndrome research and advocacy non-profit organization, is pleased to welcome five new board members: Dave and Julie Ferrulo, Nathan Grant, Elizabeth Snarey, and Kyle Underwood.
“We are so excited to have more representatives from the Hunter syndrome community join us on the board. The organization’s primary mission is to support those with Hunter syndrome and their families through research and advocacy. And the new members embody the enthusiasm and eagerness that is so present in our community. More boys with Hunter syndrome are being treating for the cognitive manifestations of the disease than ever before in history, and we are here to help that number grow even more,” said Kim Stephens, President, Project Alive.
The new members come from a diverse background with unique perspectives on Hunter syndrome.
Julie is a mom of two boys, including Teddy who was diagnosed with Hunter syndrome at 1.5-years-old in early 2020. During the initial dark days after diagnosis, Julie’s brother found Project Alive online, and it immediately provided valuable information along with a sense of hope and community.
Julie graduated from Providence College with a bachelor’s degree in Health Policy and Management and Northeastern University with a master’s degree in Health Informatics. Specializing in data analytics and visualization, Julie is looking forward to bringing her professional skills and years of experience in the healthcare industry to Project Alive. Julie lives outside of Boston with her husband Dave and children Teddy and Will. She enjoys spending as much time as possible on Cape Cod with her family.
Dave’s son Teddy was diagnosed with Hunter syndrome in early 2020. Soon after, he quickly pivoted from parent to advocate, vowing to be as close to a cure as possible. Dave, an optimist at heart, and his wife Julie are committed to finding joy every day and providing Teddy with the best life possible. Dave is thrilled to be joining the board to advocate and contribute on a larger level.
Professionally, Dave works in the financial services industry and graduated from Suffolk University with a BA in Management. A lifelong Massachusetts resident, Dave can often be found on the golf course or rooting for his beloved Patriots.
Nathan Grant is the twin brother of Nik Grant who has mucopolysaccharidosis (MPS) type II, also known as Hunter syndrome. Nik has been Nathan’s biggest inspiration. In 2015, Nathan created Siblings with a Mission to support siblings who have brothers and sisters with complex health conditions. In addition to Siblings with a Mission, Nathan is also very passionate about research on MPS and related conditions. From Cincinnati, Ohio, Nathan received his undergraduate degree in Molecular and Cellular Biology from Harvard College and an MPhil in Health, Medicine, and Society at the University of Cambridge as a Harvard-UK Fellow. In the future, Nathan hopes to work in the field of medicine to help people with complex health conditions and their families.
Elizabeth is the mother of Michael, who has severe Hunter syndrome. Her passion for equity for all, inclusion, and family support had personal beginnings. She lives in Atlanta, Georgia where she works the Maternal and Child Health Family Support Coordinator with the Georgia Department of Public Health. She has a master’s degree in Social Work, as well as 5+ years’ experience working as a paralegal at an elder and special needs law firm. There she gained an in-depth understanding of state programs and supports for families and caregivers of individuals with intellectual/developmental disabilities. Before joining the Georgia Department of Public Health, Elizabeth worked as the Director of Programs and Family Supports at The Arc Georgia. Elizabeth is a Georgia Leadership Education in Neurodevelopmental Disabilities (GaLEND) fellow. In her free time, Elizabeth is a Pure Barre instructor in Atlanta and enjoys adventures, trying new restaurants, and spending time with family.
Kyle was diagnosed with Hunter syndrome when he was four years old. Throughout his childhood, he encountered multiple doctors appointments, surgeries, and weekly infusions that allowed him to see the healthcare system from the patient perspective. Taking his experience and desire to make a difference in the rare disease community, he decided to pursue educational and professional opportunities where he could be a voice for change. He earned his Bachelor of Science in Public Health and minor in Business from the University of California, San Diego. Kyle went on to receive his Master of Health Administration from the University of Southern California. Kyle’s previous experiences include working in operations, strategy, and business development for both large health systems and emerging telehealth companies. Kyle frequently participates in patient advocacy opportunities, most recently advocating on Capitol Hill for rare diseases on behalf of the National MPS Society. Kyle currently lives in Cleveland, Ohio and works at the Cleveland Clinic.
These individuals will join current board members: Jamie Brooks, Jen Carter, Alexa Diaz, Mario Estevez, Andrew and Katey Hoffman, Sarah Mitchell, Jon Mueller, Aywon Nguyen, Kim Stephens, and Kristin Stockin.