When you work for a patient advocacy organization, you learn you must wear many hats. You simultaneously become an administrator, a listening ear, a cheerleader, a creative planner, even a member of the community. For Julia Alton, Executive Director of Canadian Fabry Association, these roles have a unique meaning because of her work with patients diagnosed with Fabry disease, an extremely rare condition that affects 1 in 40,000 males. Since accepting the position of Executive Director last February, Julia has found that working full-time in a job which allows her to help people has been both a rewarding and challenging experience.
Julia’s motivation to join the CFA came primarily from her father, who was a Fabry disease patient himself. She described how well he lived with Fabry despite his difficult symptoms,
and, for her, watching him fight gracefully every day set an example of how to live her own life. Living with a loved one who had Fabry disease also made Julia realize the fear associated with a diagnosis: fear of the symptoms, fear of the future, fear of the lack of control. Julia’s goal, in working for CFA, is to teach patients that there is a lot they can do to assuage their fear and manage their symptoms. Her main drive, as the Executive Director, is to empower patients with tools and strategies to live the healthiest and fullest life possible with Fabry disease.
Julia was nominated as a Rare Disease Difference Maker™ by Nerissa Kreher, Chief Medical Officer of Avrobio, who relays that “[Julia] is highly dedicated to the organization and is working diligently to increase [its] scope and reach.” Julia’s outreach includes the inception of the Patient Empowerment Pilot Project workshop, which is designed to empower Fabry patients with tools and strategies to make them champions of their own quality of life. “There’s a lot of things that you can’t control when you have a rare disease. What I wanted to do is help them focus on the things that they can control,” Julia says. The empowerment meetings focus on educating patients on things like diet, exercise, and outlook on life, and providing strategies to help them have more control over their health and quality of life. “It’s scary to go to the doctor and walk away with that diagnosis. When you’re educated, you lose some of that fear and sadness, and you feel powerful.” Giving Fabry patients something positive to focus on and work towards and empowering them to live well with their condition are Julia’s ultimate objectives.
Another CFA program is the Be Rare Be You initiative. CFA partnered with a temporary tattoo company to create the Be Rare Be You tattoo, and get as many people as possible to wear the tattoo in honor of Rare Disease Day. The goal is to spread awareness for Fabry and help people to feel empowered by their own unique stories.
Although it is extraordinarily rewarding to watch these programs blossom across Canada and provide Fabry patients with resources and empowerment, there are challenges that come along with the position as well. The toughest part of Julia’s work is seeing how the disease affects the same patients she has become close to and advocates so tirelessly for. However, this only inspires her to work harder to develop programs like the empowerment meetings and the Be Rare Be You campaign. These “big picture” initiatives are the hallmarks of Julia’s work with CFA, but she says that on a day-to-day basis, she also engages with the “little things” to make a difference through her work, including patient interaction. Julia strives for her work to have patient-centered focus by always asking the patients what they need and want. “I don’t sweat the small stuff; I just try to spread a little light wherever I can.”
Who’s made a difference in your rare disease? Whether it’s a teacher, parent, pastor, friend, or physician, if you want to recognize someone who has impacted your life, click here to nominate them! Not only do we hope to recognize those who have made a difference in the rare disease community, but we also want to inspire others with practical and applicable ideas of how they can make a real, lasting impact in the community.