For three years, Heather and Jeri Schey have participated in the Boston VisionWalk, which occurs this year on Oct. 26, raising money to support research and treatment for degenerative eye diseases, something they live with.
Twin sisters, Heather and Jeri were born with retinitis pigmentosa, a retinal degenerative eye disease, and at 39, they are both legally blind.
“It’s progressive. It’s getting worse,” said Jeri. “For the last couple of years it’s been getting a little worse.”
Heather explained that she and her sister used to be able to go out to the mall together and walk, but that is not the case anymore. To get around, they rely on public transportation or friends and family to give them rides.
“We can’t drive. We’ve never been able to drive,” said Jeri.
While theses sisters need to live their lives this way, the Foundation Fighting Blindness, the organization that sponsors VisionWalk events across the country, is trying to change that.
Heather explained that Foundation Fighting Blindness funds and conducts research into treatments and a possible cure for a number of degenerative eye diseases such as retinitis pigmentosa, macular degeneration, Usher syndrome and more.
The Boston VisionWalk, which occurs at Artesani Park in Brighton, Mass., is one of 51 walks across the country. According to their fundraising website, the events have featured 100,000 walkers and raised $28 million.
The Foundation has been able to make many advances, especially in the treatment of macular degeneration. According to Heather, the Foundation funded an injection treatment for macular degeneration that has stopped deterioration and even restored vision in patients. There was also research done with stem cells, which were injected into a blind man’s eyes; he can now drive.
“That’s why we’re so passionate,” said Heather, explaining that stories like this give her and her sister hope that their lives may change for the better through the work done by the Foundation.
The two also know that every case is different.
“It’s like snowflakes; no one is the same,” said Jeri, pointing out that she and her sister don’t even have the same symptoms.
Both sisters say their vision is not necessarily blurry, but they need to hold items very close to read and have absolutely no vision at night. Heather says she has some peripheral vision, while Jeri has none. Jeri also says she has absolutely no use in her left eye at this point. Both also have no depth perception, making walking on uneven surfaces difficult.
“That’s why the cane comes in handy,” said Heather.
It was Jeri who originally become involved with the Vision Walk and Foundation Fighting Blindness about four years ago. “I really felt this pull because I kept getting e-mails about the walk,” said Jeri.
Because she could not drive, Jeri had to find a way to get to the walk so she could volunteer. Organizers at the time helped Jeri connect with a Westerly woman whose son had recently been diagnosed with retinitis pigmentosa and they went together.
“The next year, Heather got involved,” explained Jeri.
The sisters formed Team Blind Faith, to showcase their Christian religion and as a fun play on words.
“It kind of stuck,” said Jeri.
The sisters have participated in the walk for three years. Although they are legally blind, both Heather and Jeri do walk during the event. Volunteers and route markers help to ensure walkers stay on the course; Heather uses a cane, and Heather’s boyfriend, Tim Deignan, has participated with the two in the past.
The two also feel they have been very successful in their past fundraising endeavors.
“Two years ago, we raised $1,800, which we thought was impressive because we don’t have a large circle of friends and family [to donate],” said Heather.
Last year, the two were able to raise $1,100 for the walk.
Now, their goal is to raise $5,000 for the cause by the Oct. 26 race; they have raised more than $900 so far.
Heather explained a fundraiser with the Pawtucket Red Sox proved to be a great success. The team does a 50/50 ticket sale fundraiser for non-profits. Heather explained that $4 from every $8 sold goes to the charity and the team raised $425 that night.
Both Jeri and Heather were incredibly thankful to their friends, and Blind Faith teammates, Mark and Lydia Mazella for their help with the Paw Sox event.
“They were responsible for selling 61 tickets for the Paw Sox game,” said Heather.
Team Blind Faith, which also includes Deignan and Pam Drew, is also hoping to get a boost in their total raised by winning Alan’s Challenge Day, sponsored by Foundation Fighting Blindness. Heather explained that the team who has raised the most money (over $500) by Oct. 9 will earn the grand prize of $1,000 and the next eight highest teams (also with totals over $500) will each receive an additional $500 to their fundraising total.
The team will also have a tent at Woonsocket’s Autumn Fest at the World War II Memorial Park. In addition to providing information about their walk and hosting a bake sale at the Sunday Oct. 13 event, Heather explained that the Providence Bruins would be giving Team Blind Faith a game-used, signed hockey stick. Heather said they plan to sell entry tickets for $3 each for a sweepstakes to win the stick.
To find out more about Foundation Fighting Blindness, visit www.blindness.org, or to donate to the Schey sisters’ VisionWalk team, visit www.fightblindness.org, or to donate to Schey sisters' VisionWalk team, visit www.fightblindness.org/goto/blind_faith.