HeadWise HeadWise: Volume 6, Issue 2 - Page 26

M due to the disease, don’t often have oppor- igraine is often stigmatized and patients, tunities to fight that stigma for themselves. The nonprofit organization, Miles for Migraine, is sending this message to individuals with migraine: there is no action too small when it comes to creat- ing awareness and fighting the stigma of migraine. “Most people don’t understand what migraine is,” said Shirley Kessel, President of Miles for Mi- graine. She said many don’t realize that migraine affects not just the person experiencing migraine, but everyone around them. “It all starts with the lack of awareness,” said Janet Corroo, RN, Vice President of Miles for Migraine. “It drives the stigma. It drives the lack of funding and it drives the lack of funding for training. There aren’t enough specialists.” Miles for Migraine, a 501(c)(3) nonprofit founded in 2008 by Eileen Jones, RN, PHN, started as a way to build support for headache research. Jones, who first visited Congress with the Alli- ance for Headache Disorders Advocacy (AHDA) in 2007, was discouraged by the lack of funding for headache research. Jones and AHDA were told that an increase in the National Institutes of Health (NIH) spending allowance for headache research grants was unlikely to increase in the near future. According to the Miles for Migraine website, milesformigraine.org, Jones and AHDA members were told by Congress that they needed to do more to build public support. Congress told them that until citizens started to demand fund- ing, NIH would not increase funding. 26 HeadW ise ® | Volume 6, Issue 2 • 2016 Erick Ward National Headache Foundation Chicago, IL Jones became the founder of Miles for Migraine in response to the challenge from Congressional representatives. Jones, who served as the president for Miles for Migraine from 2008 to 2016, started the organization with a 5K/10K run and 2-mile walk to raise public awareness for migraine and headache disorders. The first race was held in San Francisco during the fall of 2008, and attracted about 200 participants. The organization has grown since the first race. It initially expanded when Kessel brought the race to Philadelphia in 2013. After Kessel’s youngest daughter, Sydney, was diagnosed with chronic migraine at age 16, they decided it was time to do something. Kessel, who also experiences migraine, said she couldn’t believe how little migraine treatments had changed. Kes- sel said her daughter’s doctor was suggesting the same medications for Sydney that were first sug- gested to her. Kessel has three daughters, two of whom have been diagnosed with migraine. After Sydney’s diagnosis, she started looking for ways to get involved and she discovered Miles for Migraine. Kessel contacted Jones and brought the race to Philadelphia in 2013. Kessel’s role has gradually increased. In 2016, she became president of the organization. “I thought to myself this is a real opportunity for so many people. Watching my own daughters struggle and I just knew I had to do it.” The fourth-annual walk/run in Philadelphia was held in October with over 500 participants. This represents a significant increase from the 60