Meet the Adult Resource Committee!
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.