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. 

Melissa Hogan, J.D.
Past President, Founder and Board Member

Melissa is an original founder of Project Alive, as well as a lawyer, author, and speaker focused on issues important to the rare disease community. After her son Case was diagnosed with Hunter Syndrome in 2009, she left her corporate career to focus on advancing awareness, education, and research in the Hunter Syndrome community. She began writing a blog that would grow to be read in over 100 countries, and speaking on topics such as advocacy, clinical trials, and social media in rare disease. Melissa is considered one of the foremost lay experts on Hunter Syndrome in the world. She also serves as a Patient Representative for the Food and Drug Administration, an External Advisory Board member for the Mayo Clinic Social Media Network, and as a board member for several rare disease organizations. She has been published in various medical journals on issues ranging from neurocognitive testing, expanded access to medicines, to immune tolerance regimens for enzyme replacement therapies, as well as on Rare Disease Report, The Huffington Post, and The Mighty. She currently writes at MelissaHogan.me. Melissa holds a J.D. with honors and an emphasis in health law from the University of Pittsburgh School of Law, and a B.A. with honors in Communications and Political Science from Georgetown College. Prior to her son’s life-changing diagnosis, her law career included serving as a clerk on the U.S. Court of Appeals for the Sixth Circuit, a corporate and securities attorney, a professor of legal writing and health care regulatory law, and a management consultant to law firms on global strategy. She enjoys writing music and playing guitar, and is also the author of forthcoming books on pediatric medical trauma as well as patient advocacy. Melissa is married to Chris Hogan, a prominent speaker on leadership and finance and author of Retired Inspired (Ramsey Press 2016), and lives outside Nashville, Tennessee. They have three sons, including Case, and enjoy attending their football and basketball games.

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.

Barry Meisel
Board Member

Barry is married to Alyssa and has two children. After nearly a decade working for Fortune 100 financial services companies in Chicago and Denver, he now serves as the President and a Partner at Energy 2 Engage (E2), a loyalty & marketing company based in Charlotte, NC.  He and his family are committed to generating awareness for Project Alive, with the goal of raising necessary funds for gene therapy.

Alyssa Meisel
Board Member

Alyssa grew up moving often as a military kid and the adventures continued after marrying her husband Barry. They met at Grace College in Indiana, where she graduated with a degree in Biology. They have since settled in Charlotte, NC with their two children. Alyssa has been a stay-at-home Mom and has nannied part-time for friends’ children. One of those friends was the Muedder family – Alyssa watched their son, Finn, part-time until he was diagnosed with Hunter Syndrome. That led to involvement in fundraising for the cause of Project Alive and joining the board as a way to invest even further.

Katherine Lizana
Board Member

On May 15th 2017, MPS Awareness Day, Katie watched a video about a child with Hunter Syndrome that changed her life. As the mother of a healthy boy, she knew she had to join in the efforts to fund the cure for children with MPS II / Hunter Syndrome. Katie is the CEO and Co-owner of Circa Tempus, LLC, a global watch company that focuses on special needs. With a lifetime involvement in local and national service clubs and her education and professional history in marketing, Katie is focused on creative fundraising for Project Alive and Hunter Syndrome awareness. It isn’t her fight, but she believes that parents of children with Hunter Syndrome shouldn’t have to face this battle alone.

Jennifer Carter, M.D.
Board Member

Bio coming soon.

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.