Meet Our Staff

Chairman
(MPS II Parent)
Albuquerque, NM
lisa.todd@mpssociety.org

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

Vice Chairman
(MPS I Parent)
River Oaks, TX
steve.holland@mpssociety.org

Steve Holland, CPA, is the proud father of Spencer, Madison and Laynie, who were diagnosed with attenuated MPS I in 1994. The Hollands live in Texas, where they host a successful MPS fundraiser annually. Steve has served on the Society’s board since 1998, formerly serving as Chairman and Treasurer and currently serving as Vice-Chairman. He chairs the Education/ Publicity Committee and the Pathways Committee and is a frequent speaker on MPS and rare disease topics.

Treasurer
(MPS I Parent)
lynn.hopkins@mpssociety.org

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.

Secretary
(MPS VI Aunt)
Anna Maria, FL
maureen.cote@mpssociety.org

Maureen comes to the Board 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 diagnosis, forever changed Maureen and provided her family with the much needed 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.

Genetic Counselor
Montgomery, OH

lisa.berry@mpssociety.org

Lisa Berry holds a master’s degree in Genetic Counseling and 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!

(MPS I Parent)
New Castle, DE
stephanie.cozine@mpssociety.org

Stephanie Cozine is the mother of Ethan and Claire Cozine. Ethan has MPS I Hurler Syndrome and is treated at the Children’s Hospital of Philadelphia and Nemours AI Dupont. She is a member of the advocacy committee and education/publicity committee. Stephanie has experience as a hospital pharmacist and manager. She currently stays at home with her children and volunteers for rare disease organizations. She has a passion for advocacy and newborn screening.

(MPS I Parent)
New Milford, NJ
tamara.cullere@mpssociety.org

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.

(MPS IIIA)
Overland Park, KS

rebecca.dopheide@mpssociety.org

Rebecca Dopheide lives in Overland Park, KS, with one of her three daughters, Julia MPS IIIA, 26. Rebecca has two other daughters, Emma who is 28 and Olivia, 24. Upon learning of Julia’s diagnosis in 2000, Rebecca joined the MPS Society and has been a member ever since. She is excited to be on the board and is eager to give back to the society. Rebecca is a former special education teacher and fundraiser. She is looking forward to helping in those capacities and more!

(MPS VI)
Napa, CA
patricia.espinal@mpssociety.org

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.

(MPS I Parent)
River Oaks, TX
amy.holland@mpssociety.org

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.

(MPS I Parent)
Long Beach, CA
scott.hopkins@mpssociety.org

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.

(ML II)
Lewisville, TX
mercedes.johnson@mpssociety.org

In 1995, Mercedes Ramirez Johnson narrowly survived a commercial airplane crash that killed 160 people, including her parents. She presents her proprietary Second Chance Living concept, an
innovative mindset and approach with a proven track record, to organizations such as General Electric, ExxonMobil, Microsoft, NASA, Chevron, and the various branches of the US Armed Forces.

Before becoming a speaker, Mercedes spent nearly a decade in high-level sales in the pharmaceutical and medical software industries. A record-breaking, multimillion-dollar producer, she became the youngest female and sole Latino account executive at Cerner Corporation. She is an active leader in philanthropic
organizations advocating for special needs children and children’s health initiatives, notably for Make-AWish and the National MPS Society.

Mercedes and her story have been the subject of considerable national and international media coverage. Her extensive media experience includes appearances on The BBC, National Geographic Channel,
Discovery Health Channel and as a recurring guest on numerous nationally syndicated daytime talk shows on NBC and ABC. In addition, numerous national magazines and major-market newspapers have run
cover stories and special-interest pieces about her, and she was recognized as one of the country’s top young Hispanic up-and-comers by People Magazine’s Spanish edition, People en Español.

Mercedes and her children reside in the Dallas, Texas. To learn more, visit her website www.MercedesRamirezJohnson.com.

(MPS IIIA Parent)
Wilmington, DE
carl.kapes@mpssociety.org

Carl Kapes works as an 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. He is dad of Ryan (forever 16, MPS IIIA), Brayden (MPS IIIA), Bryce, and Brooklyn.

(MPS II)

Allentown, PA
jason.madison@mpssociety.org

Jason Madison has MPS II and lives in Allentown, Pennsylvania. Jason has been a member of the Society for over 25 years. This will be Jason’s second time joining the Board of Directors, and we are excited he can bring his skills and knowledge 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 worked in graphic arts and written our podcasts’ music. Jason has led his advocacy efforts with a strong voice that has brought the adult patient community together with reassurance and support.

(MPS IIIB)
Cedar Rapids, IA
stacey.montgomery@mpssociety.org

Stacey Montgomery is the mother of Lucas, MPS IIIB (1997 – 2018), and lives in Cedar Rapids, Iowa. Stacey has been a member of the Society since 2006 and has hosted many fundraising events, including the Laps for Lucas. Her family has attended multiple conferences. She also sells Lucas Gear to help struggling families in their region. Her daughters have also presented at our Family Conference, inspiring other young folks to raise funds for critical programs. Stacey wants to share the knowledge she has gained over the years caring for Lucas with physicians, therapies, and medicines with other families. She hopes to raise awareness for MPS and work in our diversity and inclusion outreach programs at the Society.

(MPS IV)
Del City, OK
sheri.wise@mpssociety.org

Sheri Wise 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.

President and CEO
terri@mpssociety.org

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.

Chief Scientific Officer
matthew@mpssociety.org

Dr. Matthew Ellinwood is the Chief Scientific Officer at the National MPS Society, where he guides research to benefit the patient community. He is a comparative medical geneticist, with over two decades of research experience with the mucopolysaccharidosis and mucolipidosis type II/III disorders. He has a long association with the Society beginning as a Scientific Advisory Board member in 2005. 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. In addition to administration of the Research Grants Program, he promotes multiple initiatives, from public health base newborn screening to drug evaluation and approval policy.

Director of Development
amy@mpssociety.org

Amy Downen is the Director of Development at the National MPS Society. Amy joined the Staff at the Society after a decade of volunteer and contract work with the Society on Family Fundraisers, National Events, Advocacy and other support. With a background in Marketing and Operations, she is passionate about organizational growth, providing resources and support, and raising funds and awareness for MPS and ML. Amy firmly believes that supporting membership and all who are touched by MPS/ML should be the focus of what we do, and those relationships will propel the organization forward on a positive trajectory. She holds an MBA with Marketing Certificate from East Carolina University, and is a military spouse to Seth since 2018. They have four dogs and two cats that keep them very active at home.

Director of Family Support and Communication
leslie@mpssociety.org

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.

Pathways Program Director
carol@mpssociety.org

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.

Pathways Program Care Coordinator
evelyn@mpssociety.org

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.

Development Support and Program Specialist
bethany@mpssociety.org

Bethany Greene serves as our Development Support Specialist at the National MPS Society.  She has a background in nonprofit work with 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.

Controller
angela@mpssociety.org

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.