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.
“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.
Michelle Teng – I was born and raised in Las Vegas, NV and relocated to Salt Lake City, UT in 2017. After a hunch from my Cornea Specialist in 2015 that I had been misdiagnosed as a child, genetic testing confirmed my diagnosis of MPS I (Scheie Syndrome). Unfortunately, treatment and access to specialists for MPS in Las Vegas was non-existent causing me to commute between Las Vegas and Salt Lake City for three years. Eventually, I made the decision to move to Salt Lake City.
I received my Bachelor’s Degree from University of Nevada, Las Vegas in Journalism & Media Studies with a focus in Marketing & Advertising, and a Minor in Travel & Tourism. After graduation I worked for both a locally owned radio station and a national television station, along with a stint as a pharmaceutical representative for Epilepsy medications. In my spare time I loves to hike, bike, snow ski, horseback ride and I’m currently training my dog for mobility service assistance.
Isabel Bueso – I am a 25-year-old who was diagnosed with MPS VI when I was 18 months old. I graduated summa cum laude from college in 2018. I like going to the beach, hanging out with friends and family, traveling, dancing, and cooking.
I joined the Adult Resource Committee in July 2020. I am an advocate who works hard to make a difference in the lives of patients with rare disorders. For the last seven years, I have educated the public about the barriers faced by patients with rare disorders. I organized Rare Disease Day events at different locations and created a scholarship to support students with rare diseases. I visited the California State Capitol in Sacramento and the U.S. Capitol in Washington D.C. to speak with lawmakers to have legislation that will help patients with rare diseases. I believe everyone has a voice and we can only change things by speaking up.
Autumn Mortensen – I am a 27-year-old with MPS VI. I live in the Pacific Northwest in beautiful Oregon with my parents and our two cats. 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 am currently looking for a job in human resources or social media management, but in my free time, I watch a lot of Netflix, drink wine, pet my cats, and play games on my laptop. My favorite games are Minecraft, Nancy Drew Mystery Games, Guild Wars 2, and a few others. I enjoy listening to music, playing in Photoshop, and coloring to relax.
Nicholas DiTommaso – I am a 21-year-old with MPS II. I graduated from Michigan State University with a degree in Chemical Engineering and Economics. I live in Madison, Wisconsin working as an engineer for Epic to implement and improve online medical records and research initiatives.
Involved in the MPS society as both a member of the Legislative Advocacy Committee and the Adult Resources Committee, I am privileged to be able to represent the voice of patients in the legislative sphere. I am an avid sports fan and film buff and I enjoy weight lifting and cycling in my free time.
Kyle Underwood – I have MPS II and live in San Diego, CA with my parents and brother who also has MPS II. I am currently completing my graduate studies in Health Administration at the University of Southern California.
Upon graduation in May, I will be pursuing an Administrative Fellowship at the Cleveland Clinic in Cleveland, Ohio. I am a rising health care leader who seeks to be an advocate for patients and the rare disease community. During my free time, I enjoy visiting the beach, trying new foods, and spending time with friends and family.
Kendra Gottsleben – 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.
Jason Madison – I am a 44-year-old man 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 served on the MPS Society’s Board of Directors from 2016 to 2020.
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.
Kaitlyn Bean – I am a 27 year old living with MPS VI. I had a bone marrow transplant and now I do enzyme replacement therapy. I am a mom to two boys and also a phlebotomist at an office.
Patricia Espinal – I am a creative, proactive, and collaborative communications and media studies student at Dominican University of California with 10 years of public speaking experience, focused on using storytelling strategies to advocate for marginalized communities.
Living with MPS VI has allowed me to understand the importance of advocating and creating a culture of belonging and inclusion. For the past several years, I have educated the public and lawmakers both locally and nationally on the barriers faced by patients with rare conditions. Along with my family, I also organized an MPS Family Picnic in Napa, CA as a way to allow individuals and families with MPS to connect and spend a fun day together.
Fanny Zambrano – 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 move 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 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 of the Workers Comp Insurance industry.