Danielle Marano, president and CEO of the Hundley Foundation, said participants will often form groups with friends, family members and co-workers and work together to fundraise.
Some teams come up with creative names centered around a family member or friend who has epilepsy. Others use certain words or slogans, such as “hope for a cure” or “brave,” in their team names.
“Some teams will go all out. They get dressed up. They have their team banners. They are just really proud on that day to walk and support their loved one,” Marano said.
Marano said many teams have been affected by epilepsy or have a friend or family member who has the neurological disorder. For young people suffering from epilepsy, it is a chance to connect with others like them.
“It’s really important to them, especially the kids, to realize that they are not the only one that has epilepsy. A lot of times families come out to these walks and that is the first time a kid has met another kid very similar to them that is experiencing the same thing and is on the same journey,” Marano said.
Marano said epilepsy can often be isolating and still has a stigma attached, so it is important to bring together individuals and families impacted by it.
One important component about the event is educating about epilepsy. The foundation and sponsoring organizations will have information on the disorder for both the general public and for families and individuals affected.
“We really try to be a place where we are giving them accurate information and good trusted resources that can provide the information that they need,” Marano said.
During the event, patients will also have a chance to learn more about new epilepsy treatments.
“It’s best when they are their own advocate and are able to bring information into their doctor’s office and say, ‘Is this something that will be right for me?’” Marano said.
Marano said it is also important to dispel myths, especially in how to provide first aid to someone with epilepsy.
“A lot of people don’t know too much about epilepsy or aren’t really sure. They get their education from what they see on TV or in movies, and most of that isn’t accurate. We try to raise awareness and give correct information,” Marano said.
One common misconception about epilepsy is that a person having a seizure needs to be held down. Marano says that holding a patient down can actually be dangerous and could result in injuries such as broken bones.
Another common misconception is to put something in a person’s mouth when having a seizure to prevent swallowing of the tongue. Marano says that people will often bite but won’t swallow their tongues during seizures. They could potentially swallow items placed in their mouths during seizures and get these objects lodged in their lungs.
Marano said during the walk, it is important to share this first aid information because if an individual isn’t with a loved one, someone in the general public may need to assist during a seizure.
While the walk is educational, it also has a personal element to it, especially with Hundley.
The NFL player will be out at the event, giving a speech during the opening ceremony and walking alongside participants.
An advocate and ally with a passion for helping people with epilepsy and other disabilities, the NFL player started out his football career at Chandler High School. He went on to play for UCLA and was chosen in the fifth round of the NFL draft by the Green Bay Packers. During his football career, he has also played for the Seattle Seahawks, the Arizona Cardinals and the Indianapolis Colts.
Hundley hopes to continue to expand his foundation, which he started in 2019 with his sister. For him, it will always have a personal connection.
His sister Paris was diagnosed with epilepsy at age 11, and Hundley remembers that growing up, he and family didn’t really talk about his sister’s condition with others. It wasn’t until Hundley attended UCLA that he began to connect with local epilepsy foundations and share his story publicly.
“Growing up in Arizona, there wasn’t a support system. It wasn’t until I got to UCLA that I talked about it openly, when the story got out there. Until then, we weren’t talking about it,” Hundley said.
Hundley said that by opening up about his own experience, other people, including athletes, have felt more comfortable talking with him about theirs.
“They feel they have a community. It creates a safe space,” he said.
Hundley said there is more information available and more of a support system for people who have epilepsy today. This includes his nephew Elijah, who suffers from infantile spasms and autism.
He hopes through the foundation to give people with epilepsy a platform to share their experiences.
“A lot of people never get to express themselves. Now they have a platform. That’s what it’s all about,” Hundley said.
The foundation also holds holiday gift drives for children in Arizona, Nevada and California and has in-person and online support groups.
On Tuesdays, the foundation holds an online support group for people and families affected by epilepsy. It is open to individuals from different parts of the world.
The online support group starts at 1 p.m. Pacific Time and is accessible through facebook.com/hundleyfoundation or
instagram.com/
thehundleyfoundation.
Hundley said that giving back to his home state has always been important to him, and he hopes to continue to do more in Arizona.
Through the Brett Hundley Scholarship, the football player gives away two scholarships each year to student-athletes at Chandler High School. The foundation mainly raises money through walks and through poker runs, which are put on by partner Rick Harrison from “Pawn Stars.”
Money and awareness have also been raised through individual and business donations and smaller events such as grill outs, glow rides, bowling and art nights, and Halloween events.
Read original article at Peoriatimes.com : https://www.peoriatimes.com/sports/article_8e66f85c-9b31-11ec-9cf2-cbd2392e607c.html
