On September 25, 2016 at Bristol Community College, Fall River, family and friends gathered for the second annual HOPE on the Horizon Fun Run and Walk benefiting The American Partnership for Eosinophilic Disorders (APFED’s) HOPE on the Horizon Research Fund.
As a new transfer student to UMass Dartmouth, what most students don’t know is that the cause is one that hits me close to home; where at the age of five my own best friend, my mother, was diagnosed with Hypereosinophilia Syndrome (HES), a form of EOS’s, which is a rare blood disease that can affect any organ inside or outside of the body.
Eosinophil associated diseases (EADs) are a series of diseases, in which the white blood cells, called the eosinophils, appear in above normal amounts in the inflicted area. With the chance of almost losing my mother it stoked me to take action, advocating since a very young age.
(EADs) are scarcely known and the organization needs your help to find a cure. “Eosinophil-associated diseases are rare, chronic diseases. There is no known cure and no FDA-approved therapies to treat these diseases. APFED’s Hope on the Horizon Walks offer a great opportunity to bring awareness to communities about these diseases, which are emerging as a worldwide problem,” said APFED Executive Director Mary Jo Strobel.
Walkers and runners enjoyed a touching opening ceremony: filled with a poem, personal stories, scenic views of early morning sun on the pond, as well as activities such as pumpkin decorating, tattoos, music and photo booth services provided by South Coast Entertainment, food provided by KIND Bars, Perry’s Bakery, New York Bagel, Noquochoke Orchards and our national platinum sponsor, Enjoy Life.
What made this year extra special was the energy of the walkers who created team names to support their loved ones: Madeline’s Mighty Marchers, Gage’s Gang, Caelyn’s Crusaders, The EOE Chompers, Maddie’s Secret Admires, The Handsome Fellas Over at the Campus PD (Bristol Community College’s Police Department), The Bernier Bunch, Team Connor B., The PINK Panthers, Wisely’s Warriors, Olivia’s Happy Feet, The Hunger Game, Beams Team and sports teams, Westport High School’s Wildcats Soccer and Bishop Connolly’s Track team which gathered together as a community.
Not only did the $15 registration fee raise money for research towards the cause, but raffles and a silent auction from fan favorites: New England Patriots, New England Revolution, Vineyard Vines, Laugh Boston, American Girl, Caddy Shack, Seven Stars Bakery, Roger Williams Park Zoo, Common Ground Coffee, Marguerites, Village Pizza, Beautiful Things, Wachusett Mountain, Yankee Candle and more.
UMass Dartmouth College of Arts and Sciences Academic Advisor Monica Faria never heard of the disease but fell in love with the cause. “Up until the Hope on the Horizon walk I had never even heard of Eosinophil blood cells. When these white blood cells work properly they help keep us healthy. However, there is this small, very small, percentage of our population that develops eosinophilic disorders. Unlike myself, people that were at the Hope for Horizon walk were for the most part intimately aware of the disorder,” said Faria. “Most were there to support family or friends currently diagnosed… The walk wasn’t just organized to raise money to find a cure, but it was celebration of the people living with Eosinophilic Disorders. It was about a daughter celebrating her mother, friends celebrating each other, parents celebrating their children. The walk was emotional jovial, and true to name HOPEful.”
The walk’s success was beyond words, with funds reaching nearly $10k and funds still open. Walkers and runners traveled from far and near to come together to support our EOS friends.
Strobel believes that the HOPE walk is more than special and goes the extra mile to connect one another in a pool of shared values.
“Because EADs are rare, many people lack in-person support with their peers. Many turn to social media and online support forums to connect with others who live with these diseases and can relate to the day-to-day challenges of disease management” said Strobel. “APFED’s Hope on the Horizon Walks are special because they offer the opportunity for that in-person connection — a place where patients and caregivers can come together and meet in person, all while supporting the very cause that brought them together…”
The walk relies heavily on volunteers and you know the saying: a simple act of kindness starts with you.
“The walks are also special because they are largely volunteer-driven, maximizing the donations to APFED’s research fund, which in turn provides grants to investigators through a competitive, peer-reviewed process and supports meetings and conferences that bring together experts in the field to advance disease research,” said Strobel.
Our sponsors also helped us to achieve our goal: New England Revolution soccer player Scott Caldwell, Mike Friar’s Attorney, The Home Depot of Somerset, Massachusetts, Studio Vogue, Mr. Jay’s Driving School and Shear Styles.
Awareness is key in helping to let patients and their families know they are not alone.
“Many people who have been diagnosed often say that lack of understanding from others can leave them feeling isolated and alone. On the outside, many of these patients ‘appear fine’ to others, but what others may not understand is the internal inflammation, tissue damage, and pain that those living with EADs struggle with,” said Strobel. “To be surrounded by others who ‘get it’ can be so uplifting and inspiring to patients and caregivers.”
One of the best parts of the walk is learning about the inspiring stories of adults and children living and breathing each day of their lives with an EAD.
“Hearing other people’s journeys firsthand, talking through challenges, seeking and offering support to their peers, and being in an environment where they do not feel they have to explain something like the need for a wheelchair because fatigue is too overwhelming that day, or the need for a feeding tube or dietary restrictions that may seem odd to others, can be life-changing for some,” said Strobel.
I encourage people to share in the rewarding experience next year; with the drive to bring the UMass Dartmouth community into the cause and together as a school, provide our stand in eliminating EOS. If interested in making a donation you can email me here