When someone you care about is affected with LHON, it can be frustrating and upsetting to feel like there is nothing you can do to help …. until you realize you can.
Meet Scarlet Keolanui.
Scarlet is a 22-year-old student at Miramar College in San Diego. Scarlet’s older bother, Stefan, lost his central vision when he was 19 years old as a result of LHON. Then, her younger brother, Matt, began to lose his vision at age 9.
Shortly after Matt lost his vision they met Jeremy – who has been living with LHON for five years, since he lost his vision at age 19. Jeremy and his family have been working to raise awareness and funding to ultimately find a cure for LHON, and recently hosted the fifth annual C.U.R.E. Ride (Cycling Under Reduced Eyesight). There was a website set up to make it easy for others to help raise funds as a part of the ride, so one night Scarlet jumped in.
Scarlet created her own C.U.R.E. Ride web page. “It was very easy,” she says. She wrote out her story, explaining how her brothers lost their vision, and how LHON had affected her family. She proudly talked about how her younger brother Matt was an inspiration, determined to remain a top-notch student and ultimately attend Stanford University some day. She finished the page by inviting people to donate to help find a cure or, if they could not donate, to simply help her spread the word. Then, through the miracle of social media, she shared her story – with everyone.
Scarlet was amazed by the response. Some of her friends donated, while many of them shared the story with their friends and family. Through Facebook, Twitter and Instagram, Scarlet not only raised money she raised awareness. Before she knew it, there were people that she didn’t know, even in other states, talking about LHON and donating money to help find a cure.
“I just told myself, ‘I’m going to do it. I’m always going to be busy, so do it now.’ And, the social media aspect was really awesome, because people who didn’t know anything about LHON gained awareness. My brother Matt was really touched and even shocked to see how many people cared enough to help spread the word about a cause that does not get that much attention.
You can feel so upset about there being no cure, and feel like there is nothing you can do to help. This is something you actually can do to help. Even if it is just to create awareness.“
As a result of her efforts, Scarlet raised nearly $900 toward finding a cure for LHON. Her advice to others is to “go for it!” It doesn’t matter how much or how little you raise. Every dollar raised helps, and raising awareness is just as important. Plus, it’s something that we can all do to help give our friends and family with LHON a little more hope.
You too can help raise awareness and funds for LHON research! If you would like to get involved in fundraising, please contact Karen des Jardins at [email protected].
Meet Scarlet Keolanui.
Scarlet is a 22-year-old student at Miramar College in San Diego. Scarlet’s older bother, Stefan, lost his central vision when he was 19 years old as a result of LHON. Then, her younger brother, Matt, began to lose his vision at age 9.
Shortly after Matt lost his vision they met Jeremy – who has been living with LHON for five years, since he lost his vision at age 19. Jeremy and his family have been working to raise awareness and funding to ultimately find a cure for LHON, and recently hosted the fifth annual C.U.R.E. Ride (Cycling Under Reduced Eyesight). There was a website set up to make it easy for others to help raise funds as a part of the ride, so one night Scarlet jumped in.
Scarlet created her own C.U.R.E. Ride web page. “It was very easy,” she says. She wrote out her story, explaining how her brothers lost their vision, and how LHON had affected her family. She proudly talked about how her younger brother Matt was an inspiration, determined to remain a top-notch student and ultimately attend Stanford University some day. She finished the page by inviting people to donate to help find a cure or, if they could not donate, to simply help her spread the word. Then, through the miracle of social media, she shared her story – with everyone.
Scarlet was amazed by the response. Some of her friends donated, while many of them shared the story with their friends and family. Through Facebook, Twitter and Instagram, Scarlet not only raised money she raised awareness. Before she knew it, there were people that she didn’t know, even in other states, talking about LHON and donating money to help find a cure.
“I just told myself, ‘I’m going to do it. I’m always going to be busy, so do it now.’ And, the social media aspect was really awesome, because people who didn’t know anything about LHON gained awareness. My brother Matt was really touched and even shocked to see how many people cared enough to help spread the word about a cause that does not get that much attention.
You can feel so upset about there being no cure, and feel like there is nothing you can do to help. This is something you actually can do to help. Even if it is just to create awareness.“
As a result of her efforts, Scarlet raised nearly $900 toward finding a cure for LHON. Her advice to others is to “go for it!” It doesn’t matter how much or how little you raise. Every dollar raised helps, and raising awareness is just as important. Plus, it’s something that we can all do to help give our friends and family with LHON a little more hope.
You too can help raise awareness and funds for LHON research! If you would like to get involved in fundraising, please contact Karen des Jardins at [email protected].
Scarlet and Matt with the riders following the fifth annual CURE ride (Cycling Under Reduced Eyesight).
RSS Feed