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.

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.

Julie is a mom of two boys, including Teddy who was diagnosed with Hunter syndrome at 1.5-years-old in early 2020. During the initial dark days after diagnosis, Julie’s brother found Project Alive online, and it immediately provided valuable information along with a sense of hope and community.

Julie graduated from Providence College with a bachelor’s degree in Health Policy and Management and Northeastern University with a master’s degree in Health Informatics. Specializing in data analytics and visualization, Julie is looking forward to bringing her professional skills and years of experience in the healthcare industry to Project Alive. Julie lives outside of Boston with her husband Dave and children Teddy and Will. She enjoys spending as much time as possible on Cape Cod with her family.

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.   

Cory is a wife and mom of two. She lives on a few acres in Michigan that is also home to a dog, cat, and several chickens. She enjoys spending time with her family, being outdoors, adventuring in her son's camper, and is passionate about natural, clean, living. She "retired" from her job of 9 years in optometry a year after her boys received their MPS II diagnosis (2020). The MPS community immediately captured her heart and lit a fire within to advocate, fundraise, and create change.

She has hosted several fundraisers. Traveled virtually to advocate at Capitol Hill. Has provided public comment to the Advisory Committee on Heritable Disorders in Newborns and Children. As well as attended several in person and virtual MPS conferences.

Both of her boys are involved in a clinical trial for an improved treatment. After over a year of traveling weekly to Chicago, treatment was transferred to a closer site to home. With the ability to settle into being home more and not having to do the extra traveling, she found herself desiring to do more within the MPS community.

So when the opportunity to jump on "board" with Project Alive arose, there was no hesitation. Cory is ecstatic to be a part of the team and is excited to see what her efforts can contribute.

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.

Dave’s son Teddy was diagnosed with Hunter syndrome in early 2020. Soon after, he quickly pivoted from parent to advocate, vowing to be as close to a cure as possible. Dave, an optimist at heart, and his wife Julie are committed to finding joy every day and providing Teddy with the best life possible. Dave is thrilled to be joining the board to advocate and contribute on a larger level.

Professionally, Dave works in the financial services industry and graduated from Suffolk University with a BA in Management. A lifelong Massachusetts resident, Dave can often be found on the golf course, spending weekends down the Cape and rooting for his beloved Boston sports team.

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.

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.”

Nathan Grant is the twin brother of Nik Grant who has mucopolysaccharidosis (MPS) type II, also known as Hunter syndrome. Nik has been Nathan’s biggest inspiration. In 2015, Nathan created Siblings with a Mission to support siblings who have brothers and sisters with complex health conditions. In addition to Siblings with a Mission, Nathan is also very passionate about research on MPS and related conditions. From Cincinnati, Ohio, Nathan received his undergraduate degree in Molecular and Cellular Biology from Harvard College and an MPhil in Health, Medicine, and Society at the University of Cambridge as a Harvard-UK Fellow. In the future, Nathan hopes to work in the field of medicine to help people with complex health conditions and their families.

Adam Haas (also goes by Ad) is a reliable, eager to learn and an enthusiastic
administrative caregiver within the Project Management Office at the Cleveland
Clinic Lou Ruvo Center for Brain Health located in Las Vegas, Nevada. He also serves
as an analyst in the consulting field, with a focus on strategic planning and
mentorship, and is a freelance speaker on topics of healthcare and leadership
development for an early careerist on the national stage. He is a Kent State
University graduate, with an undergraduate degree in Business Management,
Associate Degree in Liberal Arts and Minors in Healthcare Services Administration
and Healthcare Systems Management. Carrying nearly three years of administrative
experience at the Cleveland Clinic Akron General Emergency Department, the
Surgical Specialties Institute, and now the Lou Ruvo Center for Brain Health, he has
curated a vast knowledge of managing a large healthcare system such as the
Cleveland Clinic. Currently pursuing further education to obtain a Master’s Degree
in Business Administration, with a Healthcare Management focus at Case Western
Reserve University, with an expected graduation in 2026.

Also serving on the early-careerist committee of the local ACHE Chapter of
Northeast Ohio, Ad supports marketing as well as engaging with the local higher
education academia centers affiliated with The American College of Healthcare
Executives. Through his participation with ACHE, he is a 2023 Regent Award
recipient of the Outstanding Service Award. With a dedication to servant leadership,
Ad is a board member of the rare disease advocacy group entitled Project Alive,
where he participates in clinical trials research, public speaking, and raising
awareness to those affected by a rare disease.
During his free time, he has a dedication as an active dog show handler for the
American Kennel Club Association with the breed of the German Shorthair Pointer.

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.

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.