Redmond High School junior Jessica Christian is one of four teen leaders in the Vote 4 Hope campaign sponsored by the Children’s Rare Disease Network.
During the month of September, Global Genes Fund, an initiative developed by the Children’s Rare Disease Network, is in the running for a $250,000 grant through the Pepsi Refresh Grant Challenge. To win, the Global Genes Project team needs people to vote daily to help ensure this campaign receives funding for the rare disease community.
For the past three years, Christian has experienced joint pain and has seen a rheumatologist at Seattle Children’s Hospital but her illness is still undiagnosed. She has also volunteered at Children’s Hospital but found it difficult to get there each week.
“I wanted a way to help people with rare diseases and this is something I can do from home, through social networking, using my own computer and my own phone,” Christian explained. “My job, as a ‘kids helping kids’ teen leader, is to get people to vote, get people to change a logo or status on their Facebook page, to raise awareness of Vote 4 Hope and help to raise money for Children’s Rare Disease Network. The fact that it’s taken doctors three years, so far and counting, to figure out what’s wrong with me, strongly hints that a rare disease is present, so this charity project means a lot to me.”
Christian emphasized, however, that her support for Vote 4 Hope isn’t a matter of saying “poor me” or trying to draw attention to herself.
“According to the National Institutes of Health (NIH), there are approximately 7,000 different rare diseases affecting approximately 30 million people in the U.S. — and 75 percent of those are children,” Christian noted.
She said she feels “very blessed” to have access to great doctors at Seattle Children’s Hospital, “one of the best in the country,” but even the finest pediatricians can’t know everything there is to know about every rare disease out there.
“Kids can go five or more years without a diagnosis. Their symptoms can fall into so many categories,” Christian said.
She said it is easy to participate in the Vote 4 Hope campaign for Children’s Rare Disease Network. Any time between now and Sept. 30, visit www.Vote4Hope.org. The Web site guides users on three different ways to cast their votes.
Christian, who wants to become a nurse, also hopes to raise awareness at her school. Because the new school year has just begun, those plans are still in the works.
Community members who’d like to help the cause can e-mail Christian at email@example.com.