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