Advocating for the Foundation Through Professional Outreach
As a longtime supporter and advocate for the Foundation Fighting Blindness, Lora has recently begun working with the Professional Outreach team. Lora’s work helps eye care professionals in the Philadelphia region provide vital resources for their patients with inherited retinal diseases.
Lora Swatko was 26 years old when she first noticed she wasn’t seeing well in the dark. Her eye doctor at the time told her it was just night blindness, so she didn’t worry too much. But after Lora’s older brother was diagnosed with retinitis pigmentosa (RP), she decided to see a specialist and was diagnosed with RP as well.
Lora’s diagnosis of RP didn’t interfere with her life much initially, but by her late 30s, Lora had to stop driving. Years later, genetic testing identified that her and her brother’s RP was caused by mutations in the USH2A gene.
Living in Las Vegas, Nevada, when she was first diagnosed, Lora wanted to learn more and find others with her disease, which led her to the Foundation Fighting Blindness. At the time, there wasn’t a Foundation Chapter in her area, so she and Lee Weiss began the Las Vegas Chapter, participating in VisionWalks and other Chapter events for about eight years. And Lora’s VisionWalk team, Team Eye Believe, has raised more than $150,000 over the past 15 years.
Now, Lora is in her late 50s, living in a suburb outside of Philadelphia, Pennsylvania, with her two teenage children, Zac and Caroline, her wonderful husband Kurt, and their Portuguese water dog, Hazel. Since moving to the Philadelphia area in 2008, Lora has gotten involved with the Foundation’s Philadelphia Chapter. Lora also joined a local visually impaired support group called the Main Line Sight Seekers.
“I couldn’t have survived over the years without the help of my family and friends,” says Lora. “I know it’s hard to have a friend that’s visually impaired, but my support system has been so wonderful. I feel lucky and blessed that I’ve gotten the opportunity to experience the best in other human beings.”
Now Lora has moved into volunteering with the Foundation’s Professional Outreach team. Her recent work with the Foundation helps eye care professionals provide resources and information to enable patients to better understand and manage their conditions. Previously working in medical sales, Lora’s experience with reaching out and speaking to medical facilities made this the perfect opportunity for her. Lora has connected the Foundation with colleges and eye care facilities in the Philadelphia region.
Most recently, Lora has connected the Foundation with Salus University, a health science university located in suburban Philadelphia. Thanks to Lora’s effort, the Foundation and Salus’ Erin Kenny, OD, FAAO, Chief of the William Feinbloom Vision Rehabilitation Center, have built a relationship and are working together to provide resources for their inherited retinal disease (IRD) patients. This collaboration has also provided an opportunity for the Foundation’s Professional Outreach team to educate optometry students at Salus about resources for IRD patients, genetic testing, and clinical research underway for retinal degenerative diseases.
“I’m proud to say that we’ve been able to highlight Salus’ low vision program,” says Lora. “It’s great for the university, but also for anyone in the Foundation community locally that is looking for a great low vision specialist.”
In the more than 15 years Lora has been involved with the Foundation, she’s continued to stay optimistic that treatments and cures for her disease and others like it are on the horizon.
“I wouldn’t be involved for so many years if I didn’t have hope,” says Lora. “The strides that have been made in the last ten years in research is unbelievable. So, I’m hopeful that one day there will be a cure, and I hope that I’m making a difference.”
Aside from all her volunteer work, Lora is adventurous and loves to travel. Before her RP had progressed significantly, she loved mountain biking. But with her vision deteriorating more recently, she’s started skiing, using a guide most of the time. Lora is planning her first trip to Park City, Utah, where she’ll be taking lessons at the National Ability Center, an organization that helps to make recreation and outdoor activities accessible to people of all abilities.
“I wanted to find things I could still do as my eyes get worse,” says Lora. “Skiing was great for me because of the contrast between the bright white snow and people’s bodies. Ice skating is another activity that’s easier for me now because of the contrast.”
Lora is trying to do more and stay active now while she still has her remaining vision. Lora doesn’t currently have a full-time job, but now that her youngest is about to leave for college, she wants to get back into the workforce. She’s hoping to use her talents and skills in planning and being sociable to get a job in concierge services. But until then, Lora continues to advocate for the Foundation’s work and help provide support for others with blinding diseases at any stage in their diagnosis.
“The sooner you own your disease, the better,” says Lora. “So many people try to hide their blindness but coming to terms with it and sharing it with people is so necessary. One of the positives of my diagnosis is all the amazing people I’ve met from this community, even worldwide through my travels. When you have a disability, it tends to bring out the greatness and kindness in people.”