You may have seen Road Scholar Transport’s newest awareness truck, traveling the roads to support
families and research for a cure. It’s the latest truck to join our fleet and help spread the word for the
National MPS Society.
“The National MPS Society exists to cure, support, and advocate for MPS and ML,” notes the Society.
“Our research grants fund the most groundbreaking, transformative work in these rare diseases on an
international scale in clinical and scientific areas. Family support programs offer financial support for
families and individuals with MPS and ML through grants and scholarships. Legislative advocacy efforts
promote newborn screening, funding, and other legislation to best support those with these diseases
and those who will be diagnosed in the future.”
The National MPS Society represents:
- MPS I: Hurler, Hurler-Scheie, Scheie syndromes
- MPS II: Hunter syndrome
- MPS III: Sanfilippo syndrome (types A, B, C, D)
- MPS IV: Morquio syndrome (types A, B)
- MPS VI: Maroteaux-Lamy syndrome
- MPS VII: Sly syndrome
- ML: I-Cell Disease (ML II), Pseudo-Hurler Polydystrophy (ML III)
Road Scholar’s awareness truck highlights Ethan and Aiden and their journeys with Hunter syndrome. “Hunter syndrome, or mucopolysaccharidosis (MPS) type II, is a rare genetic disorder where the body lacks an enzyme to break down cellular waste products throughout the body,” the Society explains. “This causes buildup of glycosaminoglycan molecules in the body (and often in the brain), and results in progressive damage and loss of skills and functions. Without treatment, MPS II often leads to losses in areas such as eating by mouth, walking, talking, and a shortened lifespan. There is an approved enzyme replacement therapy to treat MPS II, but this does not reverse damage done to the body and does not change progression within the brain. Presently, there are clinical studies in gene therapy and in using new formulations of enzyme replacement therapy engineered to cross the blood-brain barrier.”
“Ethan Lieber (in the glasses) is the son of Emily and Steve Lieber and Aiden Marinoff is the son of
Marielle and Jason Marinoff,” states Emily. “Our children are currently 9 and 8 respectively. Our sons
were both diagnosed with Hunter Syndrome (MPS 2) a few months apart back in 2016-2017. Children
with Hunter Syndrome are born with a genetic error that causes an inability to create an important
enzyme responsible for “recycling” cellular material. Both our boys are enduring degenerative systemic
and neurological damage each day as their bodies store more and more cellular waste. Life
expectancies are low and at this time, there is no cure. Because this disease is so rare, connecting with other families provides support, information and resources. We found each other on social media
around the time our boys were both diagnosed. In an effort to raise awareness and funds, our families
joined forces. Since then, we have been consistently raising money and awareness to help fund
research and community support. Skip ahead to last fall when a connection was made between MPS and Road Scholar Transport. We learned how Road Scholar partners with different nonprofits to generously wrap their trucks to create “moving billboards” free of charge. The trucks travel across the country hoping to raise more awareness and funds. It was an easy choice to nominate the National MPS society as the nonprofit to bestow this honor. As you now know, they help the entire MPS and ML community. Marielle and I were asked to provide photos of our boys so the MPS team and the Road Scholar team could coordinate a design. We couldn’t be more honored and grateful for this opportunity and sincerely hope the truck continues to bring awareness to the entire MPS & ML community.”
To learn more about the National MPS Society, visit www.mpssociety.org.
Road Scholar Transport is proud to support such great organizations and causes. To see all of the
awareness trucks we transport for, visit https://roadscholar.com/awareness-campaign/.