Dr. Kim Stephens became just the second president of Project Alive in February 2019, taking the reins from founding president, Melissa Hogan, who will continue as a board member and focus her efforts on the research side of finding a cure for the rare disease Hunter Syndrome.
Stephens, who lives in Knoxville, Tenn., brings a tremendous amount of expertise and knowledge to this role, as well as energy and passion. She steps into the position as Project Alive is just $230,000 away from meeting its goal to fund a gene therapy clinical trial for Hunter Syndrome. The organization has raised a total of $2,268,820 and funded the preclinical work and vector manufacturing for the trial set to be conducted at Nationwide Children’s Hospital in Columbus, Ohio.
Stephens previously worked as Director of Fundraising for the National Multiple Sclerosis Society. In addition, she brings substantial business experience, having worked for IBM for 20 years in communications, product development for the IBM Accessibility Center, and most recently as the diversity and inclusion communications and education leader. Stephens received her doctorate in business from Georgia State University and focused her research on implicit bias and the role of social identity on behavioral change. She is the founder of Inclusive Thinking – a consulting company dedicated to increasing diversity and inclusion through research, education, and strategic planning. In addition, she is an associate professor at Lincoln Memorial University teaching management and leadership in the MBA program.
She will work with Mario Estevez, vice president of Project Alive, to continue the non-profit’s mission. Stephens’ son Cole was diagnosed with Hunter Syndrome, a rare and fatal disease that mainly affects boys, in 2012 at two and a half years old.
“We are thrilled that Kim is bringing her diverse set of skills to work for Project Alive. But most of all we are excited about the passion she has for our Hunter Syndrome family,” said Founder and Past President Melissa Hogan of Thompson’s Station, TN. “She is deeply dedicated to finding more promising treatments and a cure for our boys.”
With Stephens stepping into the role of president, Melissa Hogan will retain her role as founder and board member, now focusing more intently on the research side. Hogan’s experience with clinical trials and neurocognitive endpoints, as well as her work with the FDA as a patient representative and on the FDA/CTTI Patient Engagement Collaborative, will inform her efforts on patient outcomes in Hunter Syndrome. Insights from patient outcomes will be a tremendous asset to the Hunter Syndrome community considering promising research like gene therapy, gene editing and other treatments.
Project Alive is poised to serve the Hunter Syndrome community by continuing to fund and design research, assist industry in the space, and bring new insights into the scientific community about this rare disease. Project Alive continues to work closely with the National MPS Society and the other Hunter Syndrome groups with the goal of saving and improving the lives of those affected by the disease.
Project Alive is a non-profit organization dedicated to finding a cure for Hunter Syndrome (Mucopolysaccharidosis II) through research and advocacy. It is a powerful voice for children and adults with Hunter Syndrome, bringing together families and advocates with researchers, industry, and regulators. Project Alive funds promising curative research, assists researchers and industry with designing research studies for our community, and advocates for the most effective and efficient system of clinical research, evaluation, and approval. Through its innovative campaigns and grassroots efforts, Project Alive has made significant advances in public awareness about Hunter Syndrome and its symptoms, the need for early diagnosis, and available treatments and clinical trials.