Kyle was diagnosed with Hunter syndrome when he was four years old. Throughout his childhood, he encountered multiple doctor 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 speaking at the Living Rare Living Stronger NORD Patient and Family Forum. Kyle currently lives in Las Vegas, Nevada, and works at the Cleveland Clinic as a Program Manager.

Kyle has served on the Project Alive board since 2021, and has worked on several committees including marketing and Hunter Syndrome Community Conference Planning.

He also serves on the Rare Disease Legislative Advocates Committee and Young Adult Rare Representatives for the EveryLife Foundation and the Adult Resource Committee for the National MPS Society. Kyle is recognized as a prolific speaker in the rare disease and healthcare leadership community and can often be found sharing his story and raising awareness on stages across the country.

Jeanette is mom to Dominic (age 13, affected by Hunter Syndrome) and Jasmine (age 18, amazing super-sibling). She and her family have been active in the Hunter Syndrome community since the day that Dominic was diagnosed in 2011. Shortly after Dominic's diagnosis, she began hosting “Dancing with Dominic” events which were inspired by Dominic’s passion for music. In 2013, she founded the Hunter Syndrome Foundation with the goal of helping to find and fund a cure. To date, her efforts have resulted in raising about $200,000 toward research for Hunter Syndrome. 

She has collaborated with Project Alive since it was founded and is honored to be a board member to continue to serve the Hunter Syndrome community. Jeanette believes that raising awareness is the first step to finding a cure for Hunter Syndrome. She shares Dominic's story with anyone that will listen. She is also fluent in Spanish and serves as a resource for Spanish-speaking families.

On a professional note, Jeanette holds a Masters in International Affairs from UC San Diego and a BA from UC Berkeley. She has worked for the US Government Accountability Office (GAO) for 25 years, and has extensive experience analyzing and reporting to Congress on federally-funded programs. Prior to working at GAO, she worked for non-profits organizations where she served as a program manager and an internal auditor. Outside of work, she enjoys serving her community in North Texas, and being involved in activities for both Dominic and Jasmine.

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.

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.

Hello my name is John Barbour and a father to Tanner who was diagnosed with Hunter Syndrome six years ago while my wife, Shantell was still pregnant with him.  I am also a father to two wonderful daughters 25/27 years old and three granddaughters.  I spent 20 years in the military (Army), and I now currently work (23 years) as a detective with the local police department.  Once I learned of the diagnosis I began researching Hunter Syndrome because I had no idea other than stories from Shantell and her family what it was like.  I wanted to find if there was new treatment, or if there was a fighting chance for Tanner to have a life.

Using my experience as a detective I found things that could & would be beneficial for Tanner, I have 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 Shantell and I did was develop a group called Tanner’s troop, these are the people that stand behind and support not only us, but Tanner and the research for a cure.  We found that it was the easiest way for everyone to be up to date on where Tanner is in his journey.

As a hobby I do photography, and I get enjoyment of taking spontaneous photos of Tanner and any other child going through a struggle.  It is a way to capture the innocents and give them to the parents to have and cherish.

I am currently working on another degree in photography business so when I retire from the police department I can open a shop for families with kids with disabilities can come and capture everlasting pictures of their children.

When I was informed that a position on the board was opening up, I took advantage of the opportunity to join in hopes that my investigative skills could come in handy with Project Alive in finding a cure.   

With over a decade of work experience, Cory’s journey has been defined by a steadfast commitment to operational excellence and team empowerment. At BriddleWood Facility Services, his core to drive innovation in facility service management with integrity, excellent communication, a commitment to our community and a resilient mindset in order to produce a culture of customer satisfaction. It's a role that not only aligns with his expertise in project and time management but also resonates with his values of integrity, communication, and result-driven strategies.

Since starting BriddleWood, Cory’s focus has been on enhancing the company’s service delivery through meticulous planning and problem-solving. By fostering a culture of continuous improvement and leveraging his skills in communication and team building, have strengthened client relationships and achieved significant operational efficiencies. This hands-on approach has been instrumental in advancing the company's reputation as a leader in the facility services industry.

Cory is thrilled to be of service on the Board of Directors for Project Alive because he sees an immense opportunity to utilize his skillset for a great cause. He looks forward to being a part of the Project Alive vision and grow closer to the Hunter syndrome community. 

Aaron Byzak is a transformational executive and ground-breaking thought leader with 30+ years experience across emergency medical services, health policy, healthcare management, and leadership in the non-profit, social services and consulting space. A motivational and energetic public speaker and 4-time Emmy Award-winning writer and producer, Aaron is the creative designer of multiple best practice public health, advocacy, community relations, and workforce development initiatives.

He earned an MBA in Healthcare Management and Policy from UC Irvine, a BA in Social Science from Chapman University, and an AA in History from MiraCosta College. Aaron holds Certificates in Hospital and Health System Leadership and Executive Leadership from UCLA's Anderson School of Management and Cornell University, respectively. 

He lives in Vista, California with his wife and children.

Anne and Jeff Denneen share one board seat as spouses. 

Anne Denneen is CEO, COO, and CFO of the Denneen Family.  She has spent the past 22 years raising three amazing children—Darcy, Rachel and Liam—and managing all aspects of family life.  Darcy is a 2024 graduate of Chapman University and is currently pursuing a Master’s degree in Clinical Child Psychology.  Rachel is a freshman at Tufts University, where she is studying pre-med.  Finally, Liam, who has Hunter Syndrome, is 14 and in the 8th grade.  In addition to the hard work of successfully raising three children, Anne has been the primary caregiver for Liam.  She has done extensive research on Hunter Syndrome, its pathology and treatments and is a master advocate for Liam and all his healthcare and educational needs.  Although Anne gave up her career aspirations to be a full-time mom, she holds both a JD and an MBA.  She graduated in the top five in her law school class despite being pregnant for her entire second year and being a new mother for her final semesters.  Anne earned both her JD and MBA from Georgia State University and her BA from Emory University, where she majored in English.

Jeff Denneen is a Senior Partner at Bain & Company, a management consulting firm.  In addition to his work at Bain, Jeff serves on the Board of Directors of Denneen & Company (his brother’s company).  Jeff spent ~15 years on the Goizueta Advisory Board at Goizueta Business School (Emory University), and 11 years on the faculty at Goizueta, teaching one semester per year as part of his annual gift to the school.  Jeff also served on the Board of Trustees for the Atlanta Ballet, stepping down from his role in 2013 after Liam’s diagnosis.  Jeff has a BA in Economics from Emory University and an MBA from Goizueta Business School at Emory.

Before my first 2 boys were diagnosed I was a nursing assistant where I worked with children with special needs. I first got the passion from working for my brothers with Hunter Syndrome and after they passed I decided to continue working with families of special needs children but once my sons were diagnosed I just decided to dedicate everything to my boys quality of life and fighting Hunter Syndrome. In 2023 I gave birth to my 3rd son and he was diagnosed with Hunter Syndrome as well.  I was so lucky to find Project Alive and I was impressed with the work they are doing to bring awareness and advocate. Awareness means research. Research means a cure!

I have done interviews on the news in my home town to bring awareness to Hunter Syndrome. I recently had to pleasure to travel to Capitol Hill to advocate, and my youngest son helped with the newborn screen in Pennsylvania.

I had the opportunity to enroll all 3 of my boys in a clinical trial. So we packed  up and moved Pittsburgh because our hometown didn’t offer the trial, and thankfully the hospital staff welcomed us with open arms. They helped me get connected to some amazing moms and organizations and I learned of the amazing work they are doing in the Hunter Syndrome community. I’ve always asked “what is my purpose?” And now I strongly feel my purpose,  my reason for having 3 sons with Hunter Syndrome is to advocate, bring awareness, and don’t give up until there is a cure. So I decided to take my first huge leap of faith and apply to be a board member of Project Alive. No words can express how excited I am and how eager I am to see how my experience can help the cause because “their future should NOT be just a dream.”

Katey is a board-certified pediatrician and mother to three wonderful children, including her middle child Peter (6.5yrs old) who has neuronopathic Hunter syndrome. Katey graduated from University of California, San Francisco (UCSF) School of Medicine, where she also completed residency and chief residency in pediatrics. For the last decade she has practiced as a pediatric hospitalist at her local community hospital, an affiliate of UCSF Medical Center and Benioff Children's Hospitals. She served as medical director of her pediatric hospitalist program before stepping down in 2019 to focus on balancing family life with Peter's complex care. Katey is passionate about Project Alive's mission and vision for building up the Hunter syndrome community, educating and advocating for rare disease, and supporting research for promising new Hunter syndrome therapies. She previously served a two-year term on the Project Alive board from 2020-2022. Katey is married to Andrew Hoffman (Project Alive's current board chair), and together with their children they live in beautiful Marin County, CA.

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’s 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’s 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.

Victor Nwaba, a Los Angeles native, is a dedicated financial advisor with a nationwide practice and offices in Los Angeles and Orange County. He specializes in working with individuals, families, and business owners, helping them navigate their financial journeys with confidence and clarity.

As part of Modern Woodmen of America, a fraternal financial services organization, Victor’s work extends beyond financial planning. Modern Woodmen’s unique structure allows him to not only provide personalized solutions for his clients but also give back to local communities through fundraising initiatives, resources, and educational programs. Victor also partners with nonprofits to support their missions, helping them enhance their reach and impact. Victor takes pride in building meaningful relationships with his clients, grounded in trust and a shared commitment to achieving both personal and financial goals.

When he’s not working with clients, Victor enjoys being actively involved in community initiatives, staying true to his belief in strengthening the places where we live and work.

After being in the mortgage banking industry for just over 20 years, I am currently a stay-at-home mom and caretaker to my son Adam; who was diagnosed with Hunter Syndrome in 2016.  Originally from Southern California, my family relocated to the Bay Area in 2021 so that Adam could participate in a clinical trial.  I am dedicated in providing Adam with the best possible care and opportunities. In addition to being a mother and caregiver, I am passionate about giving back to the Hunter Syndrome Community- a community that embraced my family and understood the impacts of this diagnosis.  I look forward to applying my personal and professional experiences to support others within the Hunter Syndrome community.  In my free time, I enjoy reading, exploring local eateries, binge watching a good show, and spending time with my 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. 

Dr. Kim Stephens is the executive director of the Dr. Joseph Muenzer MPS Research and Treatment Center at UNC, Chapel Hill. This is a new position established to formalize and build upon the research and clinical work of MPS pioneer, Dr. Joseph Muenzer. Kim’s work focuses on three areas: knowledge share, research, and patient care. Having a son with MPS II (Hunter syndrome), herself, this is also a personal mission for Kim. Her son, Cole, was diagnosed when he was 2 ½ and has been in a clinical trial at UNC for the past eight years, so she has a unique perspective on the trial process. In addition, Kim frequently speaks as a rare disease advocate at conferences and events and serves as a mentor and resource for newly-diagnosed families. Kim is also the co-chair for the Newborn Screening Committee for EveryLife Foundation and speaks on behalf of rare disease patients to state and federal legislators.

Dr. Barbara K. Burton is a Professor of Pediatrics at the Northwestern University Feinberg School of Medicine and an Attending Physician in the Division of Genetics, Birth Defects and Metabolism at the Ann Robert H. Lurie Children Hospital of Chicago where she directs the MPS/ML Treatment Center. She is Board certified in Pediatrics, Clinical Genetics and Clinical Biochemical Genetics. Dr. Burton is an investigator in numerous natural history studies and clinical trials of new therapies for various genetic disorders. She has published over 300 peer-reviewed articles, 50 chapters in books and is an editor of two textbooks. Dr. Burton is active in professional organizations and is a Past-President of the Society for Inherited Metabolic Disorders and the Chicago Pediatric Society. She served for four years as a member of the Secretary Advisory Committee on Heritable Disorders in Infants and Children, the federal advisory committee that makes recommendations regarding newborn screening in the US. She is an Emeritus Member of the Board of Directors of the Greater Chicago Area March of Dimes and received a Lifetime Achievement Award from the March of Dimes in 2018. She is a member of the Scientific Advisory Board of the National MPS Society and of Project Alive and serves on the medical advisory board of a number of other patient advocacy organizations.

Julie Eisengart is an Associate Professor of Pediatrics at the University of Minnesota Medical School and the Director of the Neurodevelopmental Program in Rare Disease. As a pediatric neuropsychologist, she specializes in rare neurodegenerative disorders of childhood, evaluating functional course of disease and response to therapy. Her research has focused on the MPS disorders, particularly examining outcomes of early diagnosis, newborn screening, and novel therapies. Her research extends to defining and measuring aspects of disease that are under-represented in the clinical and research communities but are important and meaningful to patients and families, such as neurobehavioral symptoms and the family lived experience. Dr. Eisengart has been a principal or co-investigator, and research mentor, on a number of observational studies or clinical trials for MPS and other rare diseases. She has served on the Technical Expert Panel for the U.S. Secretary of Health and Human Services to consider the addition of MPS II to the Recommended Uniform Screening Panel (RUSP), and on the Working Group for the Minnesota Department of Health to implement newborn screening for MPS I and other rare disorders. Presently she sits on the National Organization for Rare Disorders (NORD)Training Work Group and the Critical Path Institute Rare Disease Clinical Outcome Assessment Consortium.

Dr. Ellinwood has over two decades of research experience with the mucopolysaccharidosis and mucolipidosis disorders. He is the Chief Scientific Officer at the National MPS Society, where he guides research to benefit the patient community. He has a long association with the Society beginning as a Scientific Advisory Board member. He is a Professor Emeritus (Iowa State University), where he conducted basic and applied research on the neuropathic MPSs. He is experienced in preclinical hematopoietic stem cell transplantation, intravenous enzyme therapy, intracisternal enzyme therapy, intraventricular enzyme therapy, systemic intravenous AAV based gene therapy, and intraparenchymal CNS directed AAV based therapy.

Paul R. Harmatz, MD, is Professor in Residence, Department of Pediatrics, University of
California San Francisco and UCSF Benioff Children’s Hospital Oakland. He is the
Medical Director of the Pediatric Clinical Research Program in Mucopolysaccharidoses
(MPS) and Related Disorders. Dr. Harmatz completed his Pediatric internship and
residency training at Harbor-UCLA Medical Center. Following a clinical and research
fellowship in Pediatric Gastroenterology and Nutrition at Massachusetts General
Hospital, he remained in Boston until 1992 as faculty in Pediatrics at Harvard Medical
School. During the last 20 years, Dr. Harmatz has participated in clinical trials with MPS I,
MPS II, IIIa, IIIb, IVa, VI, VII, and has managed clinical care for patients with MPS living in
northern California.

Dr. Elizabeth Jalazo joined the Department of Pediatrics on January 3, 2022.  She received her BS in Biology from UNC Chapel Hill in 2005 and her medical degree from Wake Forest University School of Medicine in 2011. Dr. Jalazo completed her pediatric residency at the Johns Hopkins Children’s Center in 2014 and a fellowship in Academic Pediatrics in 2015. In 2021, she completed her fellowship in Medical Genetics at UNC Chapel Hill. 

She is a prinicipal investigator in several MPS clinical trials and an integral member of the Muenzer MPS Research and Treatment Center.

BRYSON DISTINGUISHED PROFESSOR OF PEDIATRICS

Dr. Muenzer is a pediatric geneticist and researcher, with special interest in congenital metabolic disorders such as Mucopolysaccharidoses (MPS). His research includes:

• Progressive brain disease in children with MPS II, also known as Hunter Syndrome.
• Developing new avenues of treatment in children with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

Raymond Wang, M.D. is the Director of the Multidisciplinary Lysosomal Storage Disorder Program at CHOC and a board certified clinical geneticist and biochemical genetics specialist. Dr. Wang is aware of the challenges faced by patients and families with rare diseases such as lysosomal storage disorders. He has committed the program to provide:

Treatment for the lysosomal disorders that have existing therapies
Access to investigational treatment for patients with disorders that currently have no approved / effective therapy, and
Translational research vital to development of “next generation” treatments and cures for lysosomal storage disorder patients.
As an undergraduate, Dr. Wang attended Stanford University where he was a member of the Phi Beta Kappa honors society and graduated with a bachelor’s degree with Honors and Distinction in Biological Sciences. He earned his medical degree from the University of California, Los Angeles (UCLA) where he was a member of the Alpha Omega Alpha honors society. He completed his internship and residency in medical genetics and pediatrics at Cedars-Sinai Medical Center where he served as chief resident in his final year of training. Dr. Wang completed his fellowship in biochemical genetics at the UCLA Intercampus Medical Genetics Program.