Meet Our Team

Chairman | MPS I Parent | River Oaks, TX
Stephen E. Holland, CPA, is the proud father of Spencer, Madison, and Laynie, who were diagnosed with MPS I in 1994. The Hollands live in Fort Worth, TX, and have participated in multiple medical trials over the years, including the enzyme replacement trials for MPS I, resulting in FDA approval of Aldurazyme in 2003. 

Steve has served the National MPS Society’s board of directors in several roles since 1998, including Chairman of the Board, Vice-Chair, and Treasurer. He has also chaired the Research, Fundraising, Family Support, Education/Communication, and Pathways Committees. Steve speaks frequently at events advocating for MPS research, newborn screening, and rare disease topics. 

When not focused on improving the lives of families dealing with MPS and ML, Steve works as a certified public accountant and serves as a 30-year elected city council member and leader of his local church family.

Click here to contact Steve.

Vice-Chair | MPS VI Aunt | Anna Maria, FL
Maureen Cote joined the National MPS Society Board of Directors upon learning that her two beloved great nieces were diagnosed with MPS VI. The role that the Society played to assist her family as they navigated the diagnoses forever changed Maureen and provided her family with support that only the Society could offer.

Her desire to help the Society and raise awareness and support for MPS and ML has become a driving force in her life. Currently, Maureen is a home builder on the gulf coast of Florida. Prior to launching her business in home building, Maureen spent more than 20 years in the Defense Industry.

Click here to contact Maureen.

Treasurer | MPS IIIA Parent | Wilmington, DE
Carl is dad to Ryan (forever 16, MPS IIIA), Brayden (MPS IIIA), Bryce, and Brooklyn.  He lives in Wilmington, DE.  Carl works as an project/electrical engineering manager for Burns Engineering in Philadelphia, PA. He attended Villanova University where he majored in Electrical Engineering and played on the Wildcats baseball team. He has raised more than $1 million for Sanfilippo syndrome through various fundraisers. Carl summitted Mt. Kilimanjaro in 2012, Mt. Rainier in 2016, and Pico de Orizaba in Mexico in 2018, all as fundraisers.

Click here to contact Carl.

Secretary | MPS I Parent | New Castle, DE
Stephanie Cozine is mother to Ethan (MPS I) and Claire. Ethan was diagnosed with MPS I in 2016 at the age of 9 months and received a life-saving bone marrow transplant at 11 months.

It wasn’t until 2020 that Stephanie joined the National MPS Society Board of Directors, where she has since served as the chair of the Education/Communication and Advocacy Committees, while actively participating in additional committees. Beyond her role as Secretary, she also currently serves as the Advocacy Committee Chair.

Stephanie has a passion for newborn screening, empowering youth advocates, and expanding treatment access for patients and their families. She has a Bachelor of Science in Biology from Texas A&M University and a Doctor of Pharmacy from the University of Houston. Her professional experience includes hospital pharmacy and pharmacy management, and she frequently appears as a guest lecturer at pharmacy schools and allied health schools.

Click here to contact Stephanie.

Genetic Counselor | Montgomery, OH
Lisa is a licensed Genetic Counselor at Cincinnati Children’s Hospital.  She has worked with individuals and families affected by MPS and other rare disorders for over 15 years.  Her experience includes working with families to establish a diagnosis, initiate treatment and/or management, assist with insurance issues and provide care coordination and support. She has special interest in clinical trials and newborn screening in the state of Ohio.  She was inspired to join the Board after a conversation with one of her patients’ mothers!

Click here to contact Lisa.

MPS II Parent | Seal Beach, CA
Steve Chesser served 20 years in the U.S. Navy and has a background in media relations and corporate philanthropy. He lives in Seal Beach, CA with his wife Karole, son Bryce (MPS-II), 28 and daughter Bryn, 26. We joined the MPS Society when Bryce was diagnosed November 22, 2000 (yes, we remember the date!).

Bryce creates graphics and social media content for an engineering firm and Bryn is a psychologist and therapist at a practice that serves troubled adolescents. I previously served on the Board 2004-10, and raised some $300,000 for MPS-II research. Our MPS journey has included a Make-A-Wish trip to the White House so Bryce could thank President Bush for signing the Rare Disease Act of 2002.

Click here to contact Steven.

MPS I Parent | New Milford, NJ
Tamara Cullere holds master’s degrees in education and special education and has been teaching for 16 years. She is the mother of Benji (MPS I, diagnosed in 2017), Tyler, and Lucas. Tamara volunteers on the family support, advocacy, and education/publicity committees, and brings a wealth of knowledge, connection, and desire to create a strong community network within our members. She has recently published her first book, Emotions of a Super Sibling.

Click here to contact Tamara.

MPS VI | Napa, CA
Patricia Espinal has MPS VI and lives in Napa, California. She has been a member of the Society since 2004. Since then, she has run her own Foundation, MPS6Cess, and has attended numerous Society events. Patricia’s goals while serving the Society include growing international friendships and bridging cultural barriers with the Latino population. In addition, she hopes to provide input into our newly forming diversity and inclusion programs at the Society. Patricia’s oldest brother Harold passed away from MPS VI, and this loss has motivated her to give back.

Click here to contact Patricia.

MPS I Parent | River Oaks, TX
Amy Holland is the mom of three kids with MPS I. She is an engaging public speaker and brings her sense of humor and creativity to the board. She serves on the family support and fundraising committees and works on conference planning and children’s programming.

Click here to contact Amy.

MPS I Parent
Mother of Christopher and Michelle (MPS I). Lynn started her career in public accounting at KPMG, has served as a Finance Executive of publicly-traded banks for over 25 years, and is currently the CFO of Banc of California. She has been an active member of the Society for 14 years and is currently the Society’s Treasurer. She has participated in MPS Society family conferences, hosted fundraisers, and served as the 2014 Annual Fund Chairperson raising over $175,000.

Click here to contact Lynn.

MPS I Parent | Long Beach, CA
Native of Southern California and father of Christopher and Michelle (MPS I), Scott has over 20 years experience in finance and an MBA from Pepperdine University that has prepared him to serve the MPS Society. Scott has been an active member of the MPS Society for over 13 years and was first connected with the Society after the diagnosis of his daughter in 2005. He has attended many MPS family conferences and hosted multiple fundraisers. Scott believes that a strong network connecting members is the key to moving the Society forward.

Click here to contact Scott.

Dr. Kraft is a Professor in the Department of Pathology and Laboratory Medicine and the Department of Medicine, Division of Infectious Diseases.  She is Past President of the American Society for Microbiology. Dr. Kraft is trained and board certified in Internal Medicine, Infectious Diseases, and Medical Microbiology.  Dr. Kraft has had clinical and diagnostic experience in many infectious diseases epidemics: 2009 H1N1 pandemic influenza, Ebolavirus in 2014, Lassa in 2016, COVID-19, mpox, H5N1 in 2024.  Dr. Kraft led system-wide coordination of COVID-19 diagnostic testing while she was an Associate Chief Medical Officer of Emory University Hospital (2020-2023), and has served on national, state, and local advisory committees.  Her experience in clinical care of novel diseases led to the development of the Emory Human Healthcare Factors Lab. Dr. Kraft also works on antibiotic resistance elimination with the use of microbiome therapeutics such as fecal microbiota transplants.

Click here to contact Dr. Kraft.

MPS IV | Del City, OK
Sheri Lueb grew up on a farm in north central Oklahoma with her parents and 2 younger sisters. She was diagnosed with MPS IV when she was 6. She loves being on the Board of Directors and enjoys doing things to help the MPS Society. She has been a strong advocate for the Society, making multiple trips to Washington D.C., and loves to promote the Society’s fundraising initiatives.

Click here to contact Sheri.

MPS II | Allentown, PA
Jason Madison has MPS II and lives in Allentown, Pennsylvania. Jason has been a member of the Society for over 25 years. Jason is currently servicing his second term on the Board of Directors, and we are excited the skills and knowledge he brings to our families and team. Jason has been active in the Adult Resource Committee and is one of the Co-hosts of the Society podcast, Our Voices. Jason has experience in graphic design and has composed music for our podcasts’ in the past. Jason has led his advocacy efforts with a strong voice that has brought the adult patient community together with reassurance and support.

Click here to contact Jason.

MPS II Parent | Albuquerque, NM
Lisa Todd lives in Albuquerque, NM, with her husband, Jerry, and their three sons—Jack (MPS II), Jake, and Jaden. Lisa supports the Society by serving on the board, hosting the Keep Hope Alive fundraiser, and serving on the Fundraising and Governance committees. Lisa is a CPA and specializes in not-for-profit entities. Through her professional role, she provides training to many types of non-profits on a variety of governance and financial issues. Lisa has been a member of the Society since Jack was first diagnosed with MPS in June 2011 and has been a board member since January 2012.

Click here to contact Lisa.

President and CEO
Terri Klein, is the President and CEO at the National MPS Society and has spent two decades in rare disease advocacy. She was the first Executive Director for ISMRD and for the last 16 years in Development, Operations, and now CEO at the National MPS Society.  Her expertise is in organizational development, multi-tier fund development, and patient advocacy. She is a Board Director of the International MPS Network, and a member of CPAG, part of the LDN. IMPSN focuses on global therapeutic access and humanitarian outreach. Terri is a founding member of the Mucolipidosis Research Collaborative Network. Her graduate degrees are in Public Administration and Nonprofit Management. Terri’s advocacy efforts have been published. In addition to oversight of the Society, her initiatives include health equity issues, drug development, and numerous rare disease policy issues. She is the mother of Jennifer, ML III and has been a member of the Society since 2001.

Click her to contact Terri.

Chief Operating Officer

Sharon is a longtime patient advocate and thought leader in rare disease, known for her ability to unite public officials, researchers, biotech representatives, industry leaders, and other advocates in the pursuit of rare disease treatment development and impactful public policies.

Her journey in advocacy began with the founding of Taylor’s Tale, an organization she co-founded in honor of her late daughter, Taylor, to raise awareness and funding for CLN1 disease (a form of Batten Disease) research. Under her leadership, Taylor’s Tale grew from a grassroots initiative into a force in the fight against rare diseases.

Beyond her work with Taylor’s Tale, Sharon has served in key roles that reflect her dedication to improving the lives of rare disease patients and caregivers. As Senior Lead of Advocacy at Aldevron, she worked to educate, connect, and improve understanding across the stakeholder community contributing to groundbreaking advancements.

Click here to contact Sharon.

Chief Scientific Officer
With over 30 years of experience in virology and gene therapy, Dr. Loiler is a recognized leader in AAV gene therapy. Dr. Loiler has also worked alongside pioneers in the field, specializing in vector design, capsid modification, manufacturing, analytical methods, and regulatory processes. His extensive experience is instrumental in guiding the Society’s research initiatives, strengthening partnerships, and accelerating the development of transformative treatments.

Communications Director
Amber is a strategic communicator who has worked with a variety of non-profit organizations throughout her career. Prior to joining the team at the Society, she had the unique opportunity to serve a wide array of communities including people who are homeless, people with intellectual and developmental disabilities, people who are Deaf, and more.

Amber received her Master’s of Science in marketing with a concentration in new media & communications from Southern New Hampshire University.

Click here to contact Amber.

Director of Development
Wendy has over 25 years of executive and comprehensive fundraising experience. Along with her B.S and MBA in Management, she received her Non-Profit Management Certification from Duke University and successfully completed a certification in Accelerated Management Program from Yale University-School of Management. Wendy has three children: Christopher, Jordan, and Kayla, and 4 grandchildren.

Click here to contact Wendy.

Associate Director of Development
Bethany has a background in nonprofit work and experience in fundraising, event planning, and program development.  She received her B.A. in Communications with an emphasis in Public Relations from the University of Lynchburg.  She has previously served as the Director of Programs and Family Services through a regional nonprofit that supported families with children fighting cancer.

Click here to contact Bethany.

Director of Family Support & Pathways Program
Leslie Urdaneta is a licensed clinical social worker and the Director of Family Support & Communication for the National MPS Society. She began working with children and families in the MPS and ML community in 2005. She holds a B.A. in Psychology from Wake Forest University and a Master of Social Work degree from UNC Chapel Hill. Her experience includes providing crisis intervention, behavioral, educational, and clinical therapy services to children, parents, and families. At the Society, Leslie seeks to fulfill the mission of curing, supporting, and advocating for MPS from before diagnosis through bereavement. She provides direct assistance and connection with services, oversees family support programs, and disseminates information about MPS and ML to the community.

Click here to contact Leslie.

Pathways Program Care Coordinator
Carol Bryant is the Pathways Program Director with the Society. Carol holds a master’s in social work and is a Licensed Clinical Social Worker with over 30 years of experience working with children and families. Her career highlights include extensive work in all aspects of child welfare, clinical practice, program management in a non-profit organization, pediatric social work, and medical social work. She came to the National MPS Society in 2021 eager to utilize her skills and experiences working with the Society’s newly diagnosed individuals and families. In her personal life, Carol enjoys all aspects of coastal living with her husband, Todd, two college age daughters, Madi and Gracyn, and their beloved dog, Keely.

Click here to contact Carol.

Pathways Program Care Coordinator
Evelyn Fisher is the Pathways Program Manager and worked as a Licensed Clinical Social Worker for nearly a decade before obtaining a Master of Science in Genetic Counseling. In her social work career, she has worked extensively with non-profits, primarily in community mental health and medical social work.  Evie is eager to combine her social work experience with her knowledge of genetics to help the individuals and families navigate a new diagnosis of MPS and ML. She joined The Society in January 2024. Evie lives in Denver and in her free time, she enjoys taking her Great Pyrenees, Penny Lane, for a hike or camping trip to explore new areas of Colorado.

Click here to contact Evelyn.

Pathways Program Care Coordinator
Mary is a certified and licensed genetic counselor based in Boston, Massachusetts. She has extensive experience working with individuals and families affected by hereditary conditions, including many rare diseases. In this role, she provided education about genetic conditions and testing, supported informed medical management, advocated for patient care, and more. Before entering the field of genetic counseling, Mary worked as a middle school math and science teacher, supporting English language learners and students with a range of learning needs. She is passionate about education, rare disease advocacy, and promoting access to genetic care.

Click here to contact Mary.

Controller
Angela Guajardo, CPA, is the Controller for the Society.  Angela obtained her BBA degree in both Accounting and Finance from the University of Texas.  Angela has been involved with the MPS Society since 1997 when her oldest daughter Karina was diagnosed with MPS IIIA.  She and her husband began fundraising immediately after their first conference in 1999 when the inaugural walk/run initiative began with the society.  In 2002, they joined the board of directors and Angela served as Treasurer before accepting the role of Controller in 2012.  Inspired by her daughter, she is delighted that her accounting skills can be used to support the MPS Society and the work that it does.

Click here to contact Angela.