A Rare Relay for Life in Nashville

One of the biggest American Cancer Society events of the year hosted an Erdheim-Chester Disease team!

By Chesnee Green, September 21, 2018, Nashville TN. –

Erdheim-Chester Disease Global Alliance (ECDGA), a non-profit based in DeRidder LA, continually searches for a cure for Erdheim-Chester Disease (ECD).  ECD is a non-Langerhans cell histiocytosis, a very rare blood cancer, that affects fewer than one thousand patients around the world.  Patients with this disease often go misdiagnosed for many years.  Raising awareness is vital to finding the right diagnosis for such a rare disease.

In 2015, Joe Lofaro, was diagnosed with this extremely rare disease and understands the importance of raising ECD awareness.  Gearing-up for the Father Ryan Relay for Life event in Nashville, TN he was attending on September 22, Joe took the opportunity to manage an ECD awareness event the evening before.  This event would be subsequent to the ECD Awareness Week hosted by the ECDGA, held the second week in September, and coincide with histiocytosis awareness month, which is celebrated entire month.

With 12 of his classmates in attendance, Joe held an amazing ECD awareness dinner, including ECD Awareness shirts, information, fellowship, as well as a public affairs reporter to share the story.  Throughout the evening, the donation jar collected over $150.  Melinda Brown, whom is also an ECD patient and very close friend, attended the event as well.

On Saturday, Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all that where curious about ECD.  Unfortunately, the day would be cut short by a late summer rain shower that took place from 5:00 until 10:00 PM.  However, on top of spreading ECD awareness, Joe’s team managed to raise $250 for the American Cancer Society, adding to the grand total of $203,000 for this year’s Father Ryan event.  At this time, Father Ryan’s lifetime total contributions are over one million dollars!