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Meet our team

Champions for Families. Leaders in Research. Advocates for a Cure for MPS and ML.

Team

Terri L. Klein

President and CEO
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President and CEO

Terri Klein, is the President and CEO at the National MPS Society and has spent two decades in rare disease advocacy...

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Sharon King

Chief of Operations
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Chief Operating Officer

Sharon is a longtime patient advocate and thought leader in rare disease, known for her ability to unite public officials...

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Scott Loiler at MPS Society

Scott Loiler

Chief Scientific Officer
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Chief Scientific Officer

With over 30 years of experience in virology and gene therapy, Dr. Loiler is a recognized leader in AAV gene therapy...

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Amber Adams

Communication Director
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Communications Director

Amber is a strategic communicator who has worked with a variety of non-profit and fundraising organizations...

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Leslie Urdaneta at MPS Society

Leslie Urdaneta

Director of Family Support
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Director of Family Support & Pathways Program

Leslie is a licensed clinical social worker and the Director of Family Support...

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Evelyn Fisher at MPS Society

Evelyn Fisher

Pathways Care Coordinator
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Pathways Program Care Coordinator

Evelyn is the Pathways Program Manager and worked as a Licensed Clinical Social Worker...

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Mary Nahorniak

Pathways Care Coordinator
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Pathways Program Care Coordinator

Mary is a certified and licensed genetic counselor based in Boston, Massachusetts...

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Bethany Greene

Associate Director of Development
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Associate Director of Development

Bethany has a background in nonprofit work and experience in fundraising, event planning, and program development...

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Angela Guajardo

Controller
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Controller

Angela is the Controller for the Society. Angela obtained her BBA degree in both Accounting and Finance...

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Tivianna Webster

Administrative Specialist & Gift Processor
Administrative Specialist & Gift Processor

Board of Directors

Stephen E. Holland at MPS Society

Stephen E. Holland

Chairman
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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...

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Maureen Cote at MPS Society

Maureen Cote

Vice-Chair
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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...

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Carl Kapes at MPS Society

Carl Kapes

Treasurer
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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...

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Stephanie Cozine at MPS Society

Stephanie Cozine

Secretary
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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...

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Lisa Berry at MPS Society

Lisa Berry

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Montgomery, OH

Lisa is a licensed Genetic Counselor at Cincinnati Children’s Hospital. She has worked with individuals and families

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Steven Chesser at MPS Society

Steven Chesser

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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...

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Tamara Cullere at MPS Society

Tamara Cullere

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MPS I Parent | New Milford, NJ

Tamara Cullere holds master’s degrees in education and special education and has been teaching for 16 years...

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Patricia Espinal at MPS Society

Patricia Espinal

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MPS VI | Napa, CA

Patricia Espinal has MPS VI and lives in Napa, California. She has been a member of the Society since 2004...

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Amy Holland at MPS Society

Amy Holland

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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...

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Lynn Hopkins at MPS Society

Lynn Hopkins

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MPS I Parent

Mother of Christopher and Michelle (MPS I). Lynn started her career in public accounting at KPMG...

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Scott Hopkins at MPS Society

Scott Hopkins

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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...

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Sheri Lueb at MPS Society

Sheri Lueb

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MPS IV | Del City, OK

Sheri Lueb grew up on a farm in north central Oklahoma with her parents and 2 younger sisters...

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Jason Madison at MPS Society

Jason Madison

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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...

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Lisa P. Todd at MPS Society

Lisa P. Todd

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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...

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Scientific Advisory Board

Guilherme Baldo

PhD

Allison M. Bradbury

PhD

Elizabeth Braulin

MD

Barbara K. Burton

MD

Alessandra d’Azzo

PhD

Robert J. Desnick

MD, PhD

Patricia I. Dickson

MD

Maria Fuller

PhD

Amy Gaviglio

MS, CGC

Natalia Gomez-Ospina

MD, PhD

Paul Harmatz

MD

Mark Haskins

VMD, PhD

Simon Jones

MBChB, BSc, MRCPCH

W. G. Stuart Mackenzie

MD

William G. Mackenzie

MD

Adriana M. Montaño

PhD

Joseph Muenzer

MD, PhD

Matthew Pendlton

PhD

Lynda E. Polgreen

MS, MD

Deepa Rajan

MD

Mark S. Sands

PhD

Edward H. Schuchman

PhD

William S. Sly

MD

Cologera Simonaro

PhD

Lachlan Smith

PhD, Assoc. Chair & Chair Designate

Richard Steet

PhD

Ray Y. Wang

MD

Klane K White

MD

David Whiteman

BM, BCh, FAAP, FACMG

Chester B. Whitley

PhD, MD

John H. Wolfe

VMD, PhD

Committees

This group works closely with the CEO to provide oversight and guide the organization’s strategic direction. Meeting regularly, the Executive Committee addresses urgent matters between full Board meetings, supports decision-making, and upholds the mission to support families, advance research, and advocate for those affected by MPS and ML.

The Governance Committee, chaired by Maureen Cote, oversees the structure, policies, and effectiveness of the National MPS Society’s Board of Directors. The committee ensures strong board practices, recruits and nominates qualified board members, and supports leadership development to strengthen the organization’s mission.

The Family Support Committee, chaired by Tamara Cullere, focuses on strengthening the National MPS Society’s programs and services that directly support families affected by MPS and ML. The committee works to identify needs, develop resources, and create opportunities for connection, guidance, and community engagement. 

The Fundraising Committee, co-chaired by Amy and Steve Holland, guides the National MPS Society’s efforts to secure resources that support families, research, and programs. The committee develops and oversees fundraising strategies, events, and campaigns to maximize impact and engagement. 

The Advocacy Committee, chaired by Stephanie Cozine, leads the National MPS Society’s efforts to advance policies and initiatives that support the MPS and ML community. The committee works to educate lawmakers, engage members and families, and promote access to treatments, newborn screening, and research opportunities. 

The Education & Communications Committee, co-chaired by Patricia Espinal and Sheri Lueb, informs the National MPS Society’s efforts to inform and engage the community. The committee guides the development of  educational resources, oversees communications strategies, and ensures families, healthcare providers, and the public have access to accurate, timely information about MPS and ML. 

The Hola MPS Committee, co-chaired by Isabel Bueso and Patricia Espinal, is dedicated to supporting and engaging the Spanish-speaking MPS and ML community. The committee develops culturally relevant resources, programs, and communications to ensure families have access to vital information and support in their preferred language.

The Research Committee, chaired by Lisa Berry, CGC, guides the National MPS Society’s efforts to advance scientific discovery and improve treatments for MPS and ML. The committee evaluates research proposals, oversees the Society’s grant programs, and fosters collaboration between scientists, clinicians, and families to accelerate progress toward cures.

The Adult Resource Committee (ARC), co-chaired by Autumn Mortensen and Jason Madison, guides the National MPS Society’s efforts to support and empower adults living with MPS and ML. The committee identifies and addresses the unique needs of adults in the community, develops resources and programs that enhance quality of life, and advocates for opportunities that promote independence, connection, and lifelong support.

Make a Difference Today

Your gift brings hope, support, and critical resources to families affected by MPS and related diseases. Every dollar moves us closer to better treatments and a cure.

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Terri L. Klein

CNPM, MPA
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.

Contact Terri

Sharon King

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.

Contact Sharon

Scott Loiler

Ph.D.
President and CEO

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.

Amber Adams

MS
Communications Director

Amber is a strategic communicator who has worked with a variety of non-profit and fundraising organizations throughout her career. She has had the unique opportunity to serve a wide array of communities including people who are homeless, people with disabilities, people who are Deaf, and more. She received her Master’s in marketing with a concentration in new media & communications from Southern New Hampshire University. Amber is passionate about rare disease research and advocacy, not only for the MPS and ML communities, but also for her mother, who has Multiple Sclerosis.

Contact Amber

Leslie Urdaneta

MSW, LCSW
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.

Contact Leslie

Evelyn Fisher

MSW, GC
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.

Contact Evelyn

Mary Nahorniak

MS, CGC

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.

Contact Mary

Bethany Greene

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.

Contact Bethany

Angela Guajardo

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.

Contact Angela

Stephen E. Holland

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.

Contact Steve

Maureen Cote

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.

Contact Maureen

Carl Kapes

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.

In addition to the National MPS Society, Carl is also a board member of the Team Sanfilippo Foundation and Naamans Little League in Wilmington, DE

Contact Carl

Stephanie Cozine

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.

Contact Stephanie

Lisa Berry

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!

Contact Lisa

Steven Chesser

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.

Contact Steven

Tamara Cullere

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.

Contact Tamara

Patricia Espinal

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.

Contact Patricia

Amy Holland

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.

Lynn Hopkins

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.

Contact Lynn

Scott Hopkins

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.

Contact Scott

Sheri Lueb

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.

Contact Sheri

Jason Madison

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.

Contact Jason

Lisa P. Todd

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.

Contact Lisa