On March 30th, 2019 the National MPS Society, a Durham-based non-Profit that exists to cure, support, and advocate for MPS and ML, will host the Raleigh Run for Rare 5k for ML and MPS in Dorothea Dix Park (2105 Umstead Drive, Raleigh, NC 27611). The 5k will route through the rolling, beautiful green spaces of Raleigh, NC’s largest public park and conclude with the North Carolina Courage Family Picnic hosted the Klein and Schleter families featuring music, face painters, and more.
Mucopolysaccharidoses (MPS) and mucolipidosis (ML) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. The missing or insufficient enzyme prevents cells from recycling waste, resulting in the storage of materials in cells throughout the body. As the disease progresses, there is widespread damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system, leading to a shortened lifespan. The motivation for holding the 5k is shared by the Klein and Schleter families as their daughter Jennifer was diagnosed with Mucolipidosis Type III in 1999.
“It is critical we raise funds to develop a treatment for those suffering from ML. There are treatments for some of the sister MPS diseases that are similar to Jennifer’s, but not ML,” said Terri Klein, mother of Jennifer and President and CEO of the National MPS Society. Funds raised will go directly to research for not only ML III, but also the close to a dozen other syndromes related to MPS.
For 45 years the National MPS Society has advocated to support families and research for treatments and a cure for MPS and ML. In individuals with MPS or ML, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of a child’s body. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged. Since 1999, the National MPS Society has funded more than $8 million for medical research, and the goal is to continue that funding until we find cures for these devastating diseases.