How Youth Advocate Ally Bain Discovered Her Voice
When Ally Bain was 11 years old, her pediatric gastroenterologist diagnosed her with Crohn's disease. Now a college student, Ally is one of a growing number of motivated young people affected by Crohn's or ulcerative colitis who are spreading awareness about IBD.
After her diagnosis, Ally's gastroenterologist recommended the family research additional information and get involved with CCFA.
"Even at a young age, I felt empowered in knowing that while I could not cure the disease, I was able to take control through education and awareness," Ally says. "I was, and still am, extremely grateful to CCFA for helping to provide these resources. The organization is a positive catalyst in allowing patients and their families and friends to not feel alone and to join in a common cause."
When she was 14 years old, she worked on getting a bill introduced in the Illinois General Assembly that would allow anyone with a medical emergency access to an employee-only restroom. What was then a bill has since become law in Illinois, as well as in several other states, and is commonly referred to as the Restroom Access Act or "Ally's Law."
Speaking as a patient advocate on behalf of CCFA, Ally also recently testified in front of the United States Department of Justice to get the Restroom Access Act adopted into the Americans with Disabilities Act. "I will work to get the Restroom Access Act passed in additional states as well as on a federal level so that everyone will be granted their right of access to a restroom," she says.
"Speaking from personal experience, I have been fortunate enough to understand the value and importance of youth getting involved in advocacy efforts," says Ally. "Youth can lead the country in a culture of empowerment and a movement for positive change. They can help educate and encourage others to join a cause. By becoming advocates, young people are able to discover their voice."
She says it is especially important for those with chronic illnesses to become advocates because it can change their entire perspective on having the disease. "Due, in part, to coming to terms with having Crohn's and learning the importance of advocating on behalf of others with Inflammatory Bowel Disease, I have realized my purpose in wanting to help educate others."
Two years ago, Ally joined CCFA's National Youth Leadership Council (NYLC), which works to improve the lives of those with IBD through advocacy, awareness, and fundraising. "As a Council, we have participated in IBD Day on the Hill as well as fundraisers like Phones for Crohn's," Ally says. "We have also worked towards individual goals, including establishing a campus group, called the Crohn's and Colitis Student Forum, on our college campuses."
Of course, Ally is still aware of the stigma that surrounds IBD. "When I was in high school, many of my closest friends became my worst bullies when they got sick of me being sick. They stopped talking to me. Sometimes, they would even bend over, grab their stomachs, laugh and complain, 'Oh, look, I have Crohn's Disease.'"
But Ally strongly believes that educating people will allow for patients to have a better chance of coming to terms with their illness and joining the cause as advocates.
"I will continue to help spread awareness, fundraise, and advocate so that we may all feel empowered in our ability to lead productive, successful, and healthy lives."
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