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 the Executive Director of the Dr. Joseph Muenzer MPS Research and Treatment Center at UNC School of Medicine.

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 Carrboro, North Carolina with her older son Connor, Cole and a dog named Rosie. She enjoys running, swimming, cycling and playing outside with her boys.

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.

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.

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 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 or rooting for his beloved Patriots.

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.

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.

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.

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.

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.

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.