The Adult Resource Committee exists to provide support for teens and adults diagnosed with MPS or ML. The group holds monthly Zoom meetings and other events throughout the year. Below you will find links to some helpful resources that are tailored specifically for this unique section of the MPS and ML community.
If you are interested in learning more or joining the Adult Resource Committee, please contact us at arc@mpssociety.org.
If you would like to receive an Adult Road Kit, you may request one by emailing our office at info@mpssociety.org.
“Rarely Defined” Partnership program – Are you an individual 12 years or older with MPS or ML? Would you love to connect with similar individuals in a partnership program to gain insight, guidance and resources through peer support? The ARC’s “Rarely Defined” program partners up teens and adults to create unique relationships to share advice and learn more about the challenges of the MPS and ML journeys. Please follow this link to complete an interest survey and learn more.
Shop the Rare Aware Shop! Designs were created by our ARC members, and proceeds directly benefit programs for adults with MPS or ML.
I was diagnosed with MPS VI when I was about 18 months old. I live in the Pacific Northwest in beautiful Oregon with my parents and our two cats and dog. I graduated with my Bachelor’s in Business with a focus on Management and a minor in Psychology from Western Oregon University.
I have been to a couple of MPS conferences and I was in the Phase 1 clinical trials for NAGLAZYME. I have been working since 2021 processing incentive contracts. In my free time I play computer games a lot, read, watch Netflix, drink wine, and spend time with my family and pets.. My favorite games are Final Fantasy 14, Disney Dreamlight Valley, Stardew Valley, and a few others. I enjoy listening to music, playing in Photoshop, and coloring to relax.
As chairperson for the ARC since 2021, I enjoy collaborating with my fellow affected adults to gather resources that we feel would benefit the growing adult community. One of my favorite projects currently is our Zoom Social Gathering which aids in promoting connections and support throughout the year.
At the age of 18 months, I received a diagnosis of MPS VI. I graduated Summa Cum Laude from California State University with a bachelor’s degree in sociology and a minor in recreation. I live in California, working as a patient advocacy specialist at a pharmaceutical company for almost four years. I was part of the last (phase 3) clinical trial for Naglazyme. My favorite place to go is San Diego, and I enjoy reading, dancing, cooking, and traveling.
I joined the Adult Resource Committee in July 2020. In 2019, I had the honor and privilege to testify at a hearing at The Capitol and represent the voice of immigrant patients on lifesaving treatments. For this, I received recognition from Senator Kamala Harris. For the last eleven years, I have coordinated local events on Rare Disease Day at schools and universities, as well as meetings at the State Capitol with State Senators and Assembly members to enrich their knowledge about rare diseases. I am grateful to be a member of the MPS Society, which supports people living with MPS and ML, as well as their families.
I am a creative, proactive, and collaborative Communications and Media studies Consultant with 10 years of public speaking experience, focused on using storytelling strategies to advocate for marginalized communities.
Living with MPS VI has inspired me to advocate and create a culture of belonging and inclusion for all rare disease individuals. As a board member of the National MPS Society, I enjoy educating the public and lawmakers both locally and nationally on the barriers faced by patients with MPS/ML and other rare conditions. Along with my family, I also enjoy being part of the team that hosts the Napa Race for a Cure 5K Run, an event that not only raises critical funds for MPS and ML research and family support but allows individuals and families with MPS to connect and spend a fun day together.
I am a Marketing Communication Specialist, author, and spokesperson on living a life with a rare disease and disability. My career blends the two worlds in which I grew up: medicine and education. My membership on numerous boards, advisory groups, and professional societies keeps me actively engaged locally, state-wide, and nationally.
I enjoy being a helpful resource in providing support to families and children who have severe or life-threatening illnesses or disabilities. I have defined my life by a positive outlook and success in overcoming obstacles and refuse to be defined by Mucopolysaccharidosis (MPS)—the rare genetic condition I have had since birth.
I was diagnosed with MPS IV-A in 1986. I have 2 younger sisters and an older half brother that are not affected. My sisters and I grew up on a cattle and wheat farm in northern Oklahoma and our parents never treated me any differently than anyone else.
When I graduated high school, I went to the University of Oklahoma and there I met my first little person. I never met anyone else with MPS IV until I was 34. I joined the Board of Directors in 2019 because I wanted to do more for the National MPS Society. I have served on many committees, attended every Family Conference since 2015 in Salt Lake City and have been an advocate in my home state, Washington, D.C. and virtually when in person was not possible.
I live with my husband Eric in Oklahoma City and I have been on ERT since October 2014. We share many of the same hobbies including board games, crafts and travel.
I am an adult with MPS II Hunter Syndrome. I can trace Hunter Syndrome in my family back four generations. I am originally from Cortland, NY, and currently live in Allentown, PA. I am one of the founding members of the Adult Resource Committee and also currently serve on the MPS Society’s Board of Directors.
Despite the difficulties of having MPSII, I feel blessed to have had the opportunity to have many life adventures. I have two college degrees from Syracuse University and the State University of New York College at Brockport. I also have a long history of playing music, performing live, and being a cartoonist. My involvement in the MPS Society and the MPS community has been a blessing and I hope my efforts will help other affected adults and families in their unique life journey.
Kyle Underwood is a Project Manager III within the Project Management Office at Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, Nevada. He holds a Bachelor of Science in Public Health with a minor in Business from the University of California, San Diego, where he gained multifaceted experience in strategy, operations, and human resources during an administrative internship with a local community health system. Kyle’s journey continued with pivotal contributions to the growth of Patient Partner, a pioneering healthcare startup that evolved into a prominent digital, patient-centric community and telehealth platform.
Earning his Master of Health Administration from the University of Southern California, Kyle further honed his expertise through an administrative residency at Providence Health, focusing on value-based contracting, network development, and enterprise strategy. His commitment to healthcare leadership deepened during a rigorous 1-year Administrative Fellowship at Cleveland Clinic post-graduation, preceding a role as Program Manager in the Head and Neck Institute at Cleveland Clinic Main Campus.
Driven by a profound patient experience in childhood, Kyle champions patient advocacy, recently advocating on Capitol Hill for rare diseases on behalf of RDLA. He currently serves as Vice President for Project Alive, a Committee Member of the Adult Resource Committee for the National MPS Society, and Co-Chair of Diversity, Equity, and Inclusion for the American College of Healthcare Executives (ACHE) of Nevada. Beyond his professional achievements, Kyle embraces culinary exploration, travel to tropical destinations, and cherished moments with family and friends in his leisure time.
My name is Fanny Zambrano. I was diagnosed with Morquio at the age of 5-6 yrs old. I am the only one affected out of 9 siblings, I am the baby. I was born in Chicago, IL, and moved to Texas at the age of 12. My mother is from Mexico and my father is from Ecuador. We are a multi-cultural family! I attended regular public school and graduated from the DeVry Institute of Technology with a B.S. in Business in Administration of Operations. I am a full-time employee in the Insurance industry and volunteer at our local police.
