Our Team

Kim Stephens, DBA
President, Board Member

Kim first heard of Hunter Syndrome when her son Cole was diagnosed in 2012 at two and half years old. Since that time, she has been focused on finding a cure for this disease. She frequently speaks as a rare disease advocate at conferences and events and serves as a mentor and resource for newly-diagnosed families. 

Kim previously worked in the non-profit space as Director of Fundraising for the National Multiple Sclerosis Society. Prior to that she 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. She is the founder of Inclusive Thinking – a consulting company dedicated to increasing diversity and inclusion through research, education, and strategic planning. In addition, Kim is an Associate Professor at Lincoln Memorial University teaching management and leadership in the MBA program.

Kim received her Doctorate in Business from Georgia State University and focused her dissertation on implicit bias and the role of transformational conversation and social identity on behavioral change. Kim received her Master of Arts in Professional Communication from Clemson University and her Bachelor of Arts in English from the University of Tennessee.

Kim lives in Knoxville, Tennessee with her husband Jeff, her older son Connor, Cole and a dog named Rosie. She enjoys running, swimming, cycling and playing outside with her boys. 

Mario A. Estevez
Vice President, Secretary, Treasurer and Board Member

A native of the Dominican Republic, Mario is a father of two and a small business owner who lives in southern Florida. As a former middle and high school history teacher, Mario believes that every child deserves the right to pursue his or her dreams. After his youngest son, Sebastian, was diagnosed with Hunter Syndrome, Mario helped develop the Kids Saving Kids curriculum and coordinated implementation with Broward County School teachers and administration. His dream is to eradicate the disease that threatens to take his son’s life. Mario holds a bachelor of arts in history from the University of Central Florida.

Jennifer Hanebury-Estevez
Board Member

Jennifer Hanebury-Estevez is a mother and a middle and high school English teacher. She grew up in California, but moved to southern Florida after earning her bachelor of arts in English from the University of Ottawa in Canada. When Jennifer’s son, Sebastian, was diagnosed with Hunter Syndrome two years ago, she was inspired by the collaboration of parents and researchers to develop a gene therapy drug that had the potential to save lives. She joined the board of Project Alive because she believes that parents will lead the way towards eradicating Hunter Syndrome and other rare diseases. Jennifer’s greatest hope is to watch her son grow up to choose his own path in life.

Allison Muedder, M.S. CCC-SLP
Board Member

Allison is a speech-language pathologist living in North Carolina with her husband Jon and their three children. Her middle child, Finn, was diagnosed with Hunter Syndrome in 2016. She uses her background as a special educator and speech therapist to advocate for other families as she’s still learning to navigate her own reality. Allison’s role at Project Alive has focused on social media, communication and fundraising. Her belief is that by educating others and connecting them to the cause, the power of community can make the difference in children’s lives.

Jonathan Muedder
Board Member

Jon is the Founder and Creative Director at Caravan, a bi-coastal video production agency based in Charlotte, NC. He has won national advertising awards for his work with brands like HBO, NY Times, BMW, Pixar, and Coca-Cola. After his son Finn was diagnosed with Hunter Syndrome, he was compelled to jump on board with Project Alive and use his resources and skills to advocate for the community. His Caravan team directed and produced the Project Alive documentary series currently being used to spread awareness and raise funds for gene therapy.

Jamie Fowler, Ed.S
Board Member

Jamie is the mother of Jack who suffers from Hunter Syndrome, as well as a veteran advocate and adviser for parents of children with special educational needs. She has been providing assistance to families throughout the United States for more then 10 years. Jamie did her undergraduate work at the University of Northern Iowa with a B.A. in Therapeutic Recreation and Minor in Psychology. Her further studies include a graduate degree as an Educational Specialist and degree in School Psychology from the University of Colorado-Denver.  She practiced as a School Psychologist for over 7 years in Colorado before their family moved to Illinois. Currently, Jamie is a contracted service provider for families dealing with special needs issues in the school and community setting by providing a therapeutic approach to address their individual needs. She also does extensive advocacy in various settings which range from homes, schools, and clinical environments. Jamie was an original founder of Project Alive and has been actively working for many years to move gene therapy research into human trials for patients suffering with Hunter Syndrome. Jamie’s interests include fundraising (she and her family have raised over $200,000 for Hunter Syndrome research), advocacy for proper care, understanding and treating medical trauma in patients who are chronically ill, and Hunter Syndrome symptoms and treatment options. In her free time, Jamie is dedicated to her husband Jason, her two wonderful children, Jack (10) who suffers from Hunter Syndrome, and Juliet (6) who keeps life light and real.  She also enjoys yoga, cooking with wine, digging in dirt, and reading while she sleeps.  To follow Jack’s journey please visit heresjack.com.

Sarah Mitchell
Board Member

Sarah resides in Indianapolis, Indiana with her husband Tim and 10 year old son Declan. She graduated from North Park University in Chicago and worked in the financial services industry for 13 years before retiring to care for Declan after his MPS II diagnosis at age 3. She and her family were part of the original video campaign for Project Alive in 2015 which kicked off the efforts to fund a gene therapy clinical trial. Sarah joined the board of Project Alive in order to be on the front lines to fight for better and faster treatments for our children. Sarah’s interests include cooking, reading, traveling, interior decorating, trying new restaurants and spending quality time with friends and family.

Angela Hoover
Board Member

Originally from Pittsburgh, Pennsylvania, Angela Hoover moved to the Nashville area in 2000 with her husband Mike. They’ve known Project Alive President, Melissa Hogan, and her family for almost 20 years. She received her degree from the University of Pittsburgh majoring in Economics and Business. After owning a successful real estate appraisal company, Angela retired her appraiser license after her second son was born with Central Core Disease. Angela is now a part time realtor and a stay at home mom to their two boys. Most weekends you can find her at the ball field watching her boys play ball. Angela has a huge heart and enjoys raising animals on the family farm.

Andrew Hoffman
Board Member

Advocating for others is one of Andrew’s core values. That mission took on new meaning when his son, Peter, was diagnosed with Hunter Syndrome at the start of 2019. He and his wife, Katey, threw themselves into finding a cure for Peter and were both devastated by the lack of curative therapies and heartened by Project Alive’s work in pursuit of a better future. Andrew has utmost admiration for the children, adults, and families in the Hunter Syndrome community and is honored to serve as a Board member of Project Alive.

In his professional life, Andrew has focused his career on fighting climate change. He has worked in both Fortune 500 firms and startups, developing renewable energy projects to de-carbonize the energy sector. He is currently an executive at Leap, a clean energy marketplace integrating next-generation technologies into the electric grid. An ardent environmentalist, he wishes to leave his children, Madeline and Peter, and future generations a world as vibrant and diverse as the one we enjoy today.

Andrew holds an MBA from UC Berkeley’s Haas School of Business and a BA from Dartmouth College. When not spending time with his family, Andrew enjoys writing, hiking, running, and cycling.

Katey Hoffman
Board Member

Katey is a pediatrician and mom of two who never imagined becoming a rare disease advocate before her 1.5-year-old son Peter was diagnosed with Hunter Syndrome in early 2019. She discovered Project Alive shortly after his diagnosis and immediately connected with the mission of the organization. She was excited to join these dedicated, passionate individuals using their diverse talents to turn individual stories into substantial action — building community, educating, advocating, and supporting research for promising new therapies. Katey joined the Board to apply her skills as a physician leader to give Peter and all boys with Hunter Syndrome the hope and possibility of a full life.

Katey graduated from University of California, San Francisco (UCSF) School of Medicine, where she also completed residency and chief residency in pediatrics. She is a practicing pediatric hospitalist. She served as Medical Director of her pediatric hospitalist program before stepping down to focus on managing her son’s complex medical care and pursuing a cure. Katey lives in beautiful Marin County, CA, with her husband Andrew and two children, Peter and big sister Madeline.

Aywon Nguyen
Board Member

Aywon is an entrepreneur and stay-at-home father of two in Lafayette, CA. He earned his Bachelors of Science from the University of California, Davis and worked in the architectural/building design industry for 6 years. He then decided to pursue a career in physical therapy until the devastating diagnosis of his 2-year-old son, Noah. He was inspired to become a parent advocate after researching the current biotechnology in development for genetic diseases.

He is passionate about helping people and saving lives by continuing his service of over 10 year in the U.S. Coast Guard Reserves and also operating a successful elderly care home. In joint effort with his wife Krystal, he helped raise funds for research and became a prominent advocate for the Hunter Syndrome community in California. He joined the board because he believes that parent urgency is the driving force to find a cure for this rare disease.

Aywon loves spending time with his kids, playing sports of all kinds, biking, and developing products for parenting and special needs children.

Alexa Diaz Formidoni
Board Member

As the Director of Community Outreach for Junior Achievement of South Florida, Alexa Diaz is a seasoned relationship builder, a dedicated team player and a tireless worker. She first joined JA in 2007 as a Program Manager, where she recruited and trained volunteers to go into the classroom to teach students financial literacy. Her ability to connect with communities from around the world has been shaped by her upbringing in Quito, Ecuador – the country of her birth – and her academic and professional career across four cities in the United States. The challenges and successes encountered to build a successful volunteer platform have taught Alexa invaluable lessons in the art of persuasion and she hopes to keep inspiring and changing the lives of children all around the world. Alexa graduated from New England College in 2004 with a Bachelor of Arts degree and a concentration in Public Relations. She completed her MBA with a concentration in Marketing in 2018.

Alexa’s connection to Project Alive began when meeting the Estevez family. When Sebastian came into the world, she fell in love with his smile and incredible resilience. From the moment he was born, to the moment he was diagnosed, she felt connected to him. He was like a nephew to her. If she can help save him and other boys, she will do that with love and strength being a support for families who are the boys most incredible advocates. Alexa joins the board wanting to use her background, education and passion to find a cure for Hunter Syndrome and be a part of this incredible mission.