On February 9, 2019, a wonderful little Whispering Pines boy named Keller Blakeley was diagnosed with a rare genetic disease – Morquio A Syndrome.
Otherwise known as MPS IV, or Mucopolysaccharidoses, the genetic lysosomal storage disease affects the body’s ability to produce specific enzymes – and as a result, affects the body’s skeletal development and systems.
Because of the disease’s rarity, alongside the National MPS Society in Durham, Keller and his family are hosting a local 5K on April 18 to raise critical research-funding needed to develop MPS IV treatment options and possibly even a cure for all MPS IV patients.
Courtesy photo of Keller Blakeley.
An estimated one in 300,000 U.S. births are affected by MPS IV, and because of the genetic disease’s rarity, research funding is extremely limited. But, you can help find treatments and a cure through the “1st Annual Keller’s 5K for MPS” event.
Organized by the National MPS Society, the April 18 event will be held in The Carolina community off of Airport Road. The morning starts with a Kids Fun Run at 8 a.m., followed by the 5K Run at 8:15 a.m., and a one-mile walk at 8:30 a.m. A 9:30 a.m. Awards Ceremony will follow, along with a 10 a.m. post-event lunch and celebration at the Carolina Clubhouse, 277 Ave. of the Carolinas. Packet pickup begins at 7 a.m.
Event registration, and MPS IV research funding donations, can be made through the National MPS Society online event link bit.ly/Kellers5k. The link is case-sensitive, and 100% of monies go directly to fund research.
Learn more about MPS, the Durham-based National MPS Society, and the organization’s nationwide Running For Cures 5K Run/Walk events by visiting www.mpssociety.org.
Courtesy feature photo of the Blakeley family.