Project Alive Welcomes New Board Members and Chairman
January 30, 2024
Project Alive, a Hunter syndrome research and advocacy organization, is thrilled to announce the new additions to the 2024 Board of Directors, along with a new Board Chair. The newly elected board members are John Barbour, Daiza Gordon, Kevin Fuhrmann, Kyrah Jones, Miriam Pedroza, and Ashly Wiebelt. Current board member and former Vice President, Andrew Hoffman has been elected Chairman of the Board at the start of the year.
These individuals will join current board members: Cory Blain, Jennifer Hanebury-Estevez, Julie and Dave Ferullo, Nathan Grant, Adam Haas, Jeanette Henriquez, Andrew Hoffman, and Kyle Underwood.
At the end of 2023, long term board members completed their terms after many years of dedication to the Project Alive mission. Alongside outgoing President, Dr. Kim Stephens, outgoing board members Mario Estevez, Sarah Mitchell, Jon Muedder, and Aywon Nguyen, accomplished phenomenal tasks such as getting MPS II added to the Recommended Uniform Screening Panel (RUSP), assisting with the design of four clinical trials, and developing the Hunter Syndrome Community Conference. Their contributions have been extraordinary and their service to the Hunter syndrome community has been exemplary. Dr. Kim Stephens will continue to work closely with Project Alive in her new role as Executive Director of the Muenzer MPS Research and Treatment Center at UNC, Chapel Hill.
"It is great to see such an eclectic group join us this year, all with many varying skills and experience to launch Project Alive's new goals. Our new board members have shown great passion towards our mission and have unique perspectives to offer. I am looking forward to working alongside them this year," said Kristin McKay, President and Executive Director, Project Alive.
New Board Members Join Project Alive
John Barbour is a father to Tanner who was diagnosed with Hunter Syndrome six years ago while his wife, Shantell was still pregnant. He is also a father to two wonderful daughters 25/27 years old and three granddaughters. John spent 20 years in the military (Army), and has been as a detective with the local police department over the last 23 years. Once John learned of Tanner's diagnosis, he began researching Hunter Syndrome because he had no real knowledge of the disorder other than stories from Shantell and her family as Shantell's brother also had Hunter syndrome. He wanted to find out about new treatments, or if there was a fighting chance for Tanner to have a life.
Using his experience as a detective he found things that could & would be beneficial for Tanner, and he has never given up on research for a possible cure for Hunter syndrome and will continue the search until no family out there feels like they are hopeless. One thing that John and his wife did was develop a group called Tanner’s Troop, an online group of people that not only stand behind and support the family, but also support Tanner and the research for a cure. They found that it was the easiest way for their friends and family to be up to date on where Tanner is in his journey.
As a hobby, John enjoys photography, and he gets enjoyment from taking spontaneous photos of Tanner and any other child going through a struggle. It is a way to capture the innocence and give them to the parents to have and cherish.
John is currently working on another degree in photography business so when he retires from the police department, he can open a shop for families with kids with disabilities where they can come and capture everlasting pictures of their children.
When John was informed that a position on the board was opening up, he took advantage of the opportunity to join in hopes that his investigative skills could come in handy with Project Alive in finding a cure.
Kevin has devoted his career to impact-driven work. This path led to serving as the lead fundraiser for a disability services organization where he met Kristin McKay. Kristin’s son, Charlie, was just barely a toddler and already surrounded by a small army led by Kristin and Matt to ensure he could have a spectacular upbringing while navigating Hunter syndrome. Over time, Kevin grew to admire Kristin’s passion, heartfelt communication, and perseverance.
Professionally, Kevin serves as the Community Reinvestment Act (CRA) & Fair Lending Officer for Sunwest Bank. In this role, he leads lending, investment, and service initiatives designed to create upward mobility for low-to-moderate income communities and individuals. These efforts require mobilization and commitment of most employees and contribute meaningfully to a core value of giving back at every level of the organization.
Kevin is honored to join the Board of Directors of Project Alive, where he aims to support the pursuit of excellence in organizational structure, governance, and ability to garner resources for this united community.
Kevin holds a Bachelor of Arts in Political Science and Law & Society from UC San Diego. He serves on numerous other committees focused on economic development, affordable housing, and community services for low-income communities. In his free time, Kevin enjoys time with family and friends in sunny Long Beach, staying physically active and on the tennis court whenever possible, and tending to the responsibilities of parenting a cat and many, many plants.
Daiza is the mother to three beautiful boys. The family lives in Pittsburgh, PN. She enjoys singing and traveling with her children.
Prior to her first two son's being diagnosed with Hunter syndrome, Daiza worked as a nursing assistant where she had the opportunity to work with children with special needs. Her passion originally began with the diagnose of her two brothers. After their passing, Daiza decided to continue her work with families of children with special needs. Upon the diagnosis of her two sons, she committed herself to caring for her children and fighting for a cure for Hunter syndrome. In 2023, her third son was diagnosed shortly after birth. At that time, she discovered Project Alive and became eager to join in the advocacy work. As Daiza states, "awareness means research. Research means a cure!"
Daiza has been grateful for her past opportunities to speak about Hunter syndrome and her family's journey on the local news. She also had the pleasure of traveling to D.C. to advocate on Capitol Hill. Her youngest son's story assisted in the newborn screening process in Pennsylvania.
With the opportunity to enroll her sons in a clinical trial, Daiza packed up her family and moved to Pittsburgh. There she found other Hunter syndrome families that got her connected to the community and patient advocacy organizations. She has always focused on her purpose in life. She believes her purpose is to advocate, bring awareness, and fight for a cure. Daiza enthusiastically applied for the Board of Project Alive and is thrilled to now be serving as a board member. Daiza states, "their future should not be just a dream."
Kyrah Jones first became familiar with the Hunter syndrome community in 2018 after being introduced to Kristin McKay, whose brother and soon-to-be-born son were diagnosed with Hunter syndrome. When Kyrah and Kristin had their sons only two months apart, the bond between their families became stronger leading to Kyrah’s volunteer work and participation in Project Alive and other Hunter syndrome events.
Kyrah works in mental health as a Utilization Review Specialist, advocating for those needing care and support.
Kyrah currently resides in Newport Beach, CA where she enjoys spending time with her son, Maben, and husband, Brent, traveling, and creating artwork.
After being in the mortgage banking industry for just over 20 years, Miriam is currently a stay-at-home mom and caretaker to her son Adam; who was diagnosed with Hunter Syndrome in 2016. Originally from Southern California, her family relocated to the Bay Area in 2021 so that Adam could participate in a clinical trial. She is dedicated in providing Adam with the best possible care and opportunities. In addition to being a mother and caregiver, Miriam is passionate about giving back to the Hunter Syndrome Community- a community that embraced her family and understood the impacts of this diagnosis. She looks forward to applying her personal and professional experiences to support others within the Hunter Syndrome community.
In her free time, Miriam enjoys reading, exploring local eateries, binge watching a good show, and spending time with her family.
Ashly Wiebelt M.S. CCC-SLP, is a speech language pathologist in Texas. She has over 17 years of experience and is currently working in early childhood intervention (ECI). She received a bachelor’s degree in communication disorders from Louisiana State University and her master’s degree in communication sciences and disorders from Southeastern Louisiana University in 2006. Ashly has experience working with children with a variety of developmental disabilities, disorders and genetic conditions. She has worked in schools, private practices, and early intervention. Ashly and her husband, Chris, have two children, Connor, age 11, who was diagnosed with Hunter Syndrome in 2017, and a daughter, Hailey, age 8. She works closely with the Hunter Syndrome Foundation and is dedicated to spreading awareness and fundraising for Hunter Syndrome. Ashly looks forward to increasing her work with the Hunter syndrome community as a new board member for Project Alive.
Andrew Hoffman elected as new Chairman
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.
Andrew is looking forward to serving Project Alive in this new capacity and is eager to dive into the organization's newly set goals.
Andrew has been a valuable asset to Project Alive throughout his time as a board member. He served as a wonderful leader alongside former President, Kim Stephens. Their united efforts allowed Project Alive to grow and reach tremendous goals. We are very fortunate to have Andrew take on this new role. His insight, professional experience, and ability to bring folks together to accomplish the plans set forth makes him perfect for this position. I am honored to work alongside him.