The Condition of Giving
Friday, Jan 09, 2015 02:17 pm
Rayanne Forbes is surrounded by volunteers. She says, “I’ve always just grown up like that.” Her grandfather founded Santa’s Anonymous in 1995. Rayanne advocates for local charities through her Twitter account and blogs about charities for the Edmonton Sun. She is also in the process of finalizing her own charity and helps local businesses raise funds for Youth Empowerment and Support Services (YESS), an organization that depends on volunteers. Rayanne also gets to act as a “cool aunt” to the kids who use YESS.
I first came across Rayanne’s Twitter account at the end of 2013. A local radio station does a roof drop each winter and Rayanne noticed that many of the items being dropped were usable. Rayanne sent out tweets telling people how they could contribute their unwanted items to local charities. If you follow Rayanne on Twitter (@RayanneForbes), you’ll often see tweets that remind us that there are many ways to help people in need.
Rayanne’s story reflects one of the many things that makes Edmonton special. She volunteers her time, energy, skills and money to help others.
Rayanne created her charity, the Graves Disease Foundation of Edmonton, because she was diagnosed with Graves in her early twenties. The foundation “started because I did a lot of searching and there wasn’t anything out there for people in Edmonton.” Rayanne realized that it was within her power to create a support system for people who needed one.
Graves disease is “a heart condition, thyroid disorder, and immune disorder all in one. It’s life-changing.” Women in their twenties make up more than 90% of those who are diagnosed.
Rayanne readily admits she was scared and had a good cry when she first realized how precarious her health and financial situation had become. But Rayanne and her dad came up with a motto: “You get bitter or you get better.” As Rayanne sat in her car trying to find a way forward, a lot of questions about her future ran through her mind. “And then I decided ‘The Graves Disease Foundation of Edmonton needs to exist.’ And that’s how it came to be.”
Like many, Rayanne has faced serious economic difficulties since her diagnosis. She doesn’t qualify for health insurance because she has a pre-existing condition. Yet, her life-saving medications and treatments are expensive. Eventually, Rayanne faced the impossible choice of paying rent or purchasing medication.
Rayanne doesn’t “want people to have to choose between rent and pills.” The goal of the foundation is simple, but it will change the lives of individuals and their families who live with Graves. Eventually, anyone with Graves from the Edmonton area will be able to apply to have medications, medical travel expenses, and some living expenses paid for through the foundation.
The funding is necessary because life-saving medications can cost as much as $10,000 every year. Rayanne’s expenses are expected to grow as the disease moves around her body and she requires more medications and surgeries beyond the six she’s already had. While Canada has a healthcare system, “it doesn’t really help for people who fall between the cracks like I do because I didn’t have a health plan.” It's the people that fall between the cracks that Rayanne wants to help financially.
Another important aspect of Rayanne’s foundation is the personal connections that she encourages. To help people connect, the foundation holds “support meetings, both online and in-person. About 40 members live in the Edmonton area.” Rayanne wants to make sure that nobody gets missed, so she goes “to all the hospitals and all the doctor’s offices, especially surgeons who deal with Graves.” Rayanne is willing to go to such lengths because “I don’t want people to feel as hopeless as I was.”
Soon after her diagnosis, Rayanne began a blog that shows readers how her illness affects her. She admits that the stories and pictures aren’t always pretty. One of the things that Rayanne struggles with is the effects of Graves on her eyes. She says, “I’ve been bullied significantly for the way that my eyes look.”
Rayanne shows blog readers pictures before and after surgery even though they make her uncomfortable. “I have highly unflattering pictures of myself all over my blog because that’s what the illness is and what it’s doing … if it helps someone else what’s the harm.”
Rayanne’s blog helps a lot of people. “In just two years my blog has almost 50,000 reads because there really is nothing out there like it. Doctors are coming to my page to read about things that aren’t in medical textbooks.”
“There’s a lack of awareness and I think that’s where I need to come in. I hate doing media, but I do it anyways to get the word out there.”
Rayanne wouldn't change anything about the last few years. “If I didn’t have [Graves] things wouldn’t have happened the way they have. I wouldn’t have a foundation, I wouldn’t be meeting other people, and I wouldn’t have found such a nice community of people that understand me.”
Over the year it has taken to build the foundation from the ground up, Rayanne’s inner toughness keeps coming out. Rather than quit when the cost and work became overwhelming, she “worked on credit for a long time.” Her family contributed seed money and she regularly puts her own money into building the foundation.
Rayanne has received a lot of support in reaching her goal. A website designer who worked on credit, a boss who designed her business cards, a job that gives her time off to take care of paperwork and promotion, and a family and boyfriend that support her unconditionally have come together to help push Rayanne over the finish line.
All of her hard work is about to pay off. Rayanne has been issued a Canada Revenue Agency charity number and will soon be able to issue tax receipts to donors.
As important as the foundation is to Rayanne, don’t expect her to expand beyond the Edmonton area anytime soon. “I truly believe what my Grandpa believed: we want to give where we live. And I’m a big fan of that. I want to meet the people that I help and I want to know them personally.”
That spirit of giving on a local level is a good way to contribute to a strong community. Rayanne says: “I get to meet a lot of cool people. I get to meet people who have the same vision as me of making the community a little bit nicer of a place.” Rayanne is just one of many Edmonton volunteers who understand the importance of community building through giving.