{"id":30074,"date":"2024-12-31T12:01:46","date_gmt":"2024-12-31T18:01:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30074"},"modified":"2025-10-02T10:02:08","modified_gmt":"2025-10-02T15:02:08","slug":"relay-for-life-i-nashville","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/relay-for-life-in-nashville\/","title":{"rendered":"Relay for Life i Nashville"},"content":{"rendered":"

One of the biggest American Cancer Society events of the year hosted an Erdheim-Chester Disease team!<\/em><\/p>\n

Av Chesnee Green<\/em>, 21. september 2018, Nashville, TN. \u2013<\/p>\n

Erdheim-Chester Disease Global Alliance (ECDGA), a non-profit based in DeRidder LA, continually searches for a cure for Erdheim-Chester Disease (ECD).\u00a0 ECD is a non-Langerhans cell histiocytosis, a very rare blood cancer, that affects fewer than one thousand patients around the world.\u00a0 Patients with this disease often go misdiagnosed for many years. \u00a0Raising awareness is vital to finding the right diagnosis for such a rare disease.<\/p>\n

I 2015 fikk Joe Lofaro diagnosen denne ekstremt sjeldne sykdommen, og han forst\u00e5r hvor viktig det er \u00e5 \u00f8ke bevisstheten om ECD. Mens han forberedte seg til \u00abFather Ryan Relay for Life\u00bb-arrangementet i Nashville, Tennessee, som han skulle delta p\u00e5 22. september, benyttet Joe anledningen til \u00e5 arrangere et ECD-bevisstgj\u00f8ringsarrangement kvelden f\u00f8r.\u00a0 Dette arrangementet skulle finne sted i kj\u00f8lvannet av ECD-bevissthetsuken, arrangert av ECDGA, som ble avholdt den andre uken i september, og sammenfalle med bevissthetsm\u00e5neden for histiocytose, som feires gjennom hele m\u00e5neden.<\/p>\n

Med 12 av klassekameratene til stede arrangerte Joe en fantastisk middag for \u00e5 \u00f8ke bevisstheten om ECD, med blant annet ECD-bevissthets-T-skjorter, informasjon, sosialt samv\u00e6r samt en journalist fra samfunnsredaksjonen som var der for \u00e5 fortelle historien. I l\u00f8pet av kvelden ble det samlet inn over $150 i donasjonsboksen.\u00a0 Melinda Brown, som ogs\u00e5 er ECD-pasient og en sv\u00e6rt n\u00e6r venn, deltok ogs\u00e5 p\u00e5 arrangementet.<\/p>\n

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.\u00a0 Unfortunately, the day would be cut short by a late summer rain shower that took place from 5:00 until 10:00 PM.\u00a0 However, on top of spreading ECD awareness, Joe\u2019s team managed to raise $250 for the American Cancer Society, adding to the grand total of $203,000 for this year\u2019s Father Ryan event.\u00a0 At this time, Father Ryan\u2019s lifetime total contributions are over one million dollars!<\/p>\n\n\t\t