Passionate Professional Outreach Volunteer Helping Newly Diagnosed

At 37 years old, Jim Shirk was diagnosed with retinitis pigmentosa (RP). The news came as a complete shock to Jim, as he wasn’t showing any symptoms and had never even heard of RP before. Jim was participating in a study for his cardiologist, and as part of the study, an ophthalmologist examined his eyes and he was told he had something called RP. The doctor said there was no treatment or cure for this disease and that it commonly leads to complete blindness. That feeling of hopelessness is what drives Jim’s passion for helping the Foundation Fighting Blindness’ Professional Outreach team now.

Jim’s RP developed slowly at first, but in the last 8-10 years, Jim’s vision loss has started progressing more rapidly. On his own, Jim eventually received genetic testing and learned that his RP is caused by mutations in his USH2A gene and that it’s recessive. Through assistance from the Opportunities for Ohioans with Disabilities, Jim received services from the Cincinnati Association of the Blind & Visually Impaired (CABVI). Jim has learned to use voice-over technology on his iPhone, JAWS software, an HD magnifier, and mobility training with a white cane.

Now 60 years old, Jim lives in Mason, Ohio, a suburb of Cincinnati, and has been married for almost 37 years to his, as he describes, compassionate, patient, and caring wife, Peggy. Jim and Peggy have three sons, none of which are affected by RP. For 30 years, Jim was a manufacturer’s representative and eventually one of the owners of a firm called Ketchum & Walton, retiring about five years ago.

“I feel very grateful for the life that I have,” says Jim. “I learned in a support group several years ago that our interactions with people may be the first time they’re ever meeting someone that is blind or visually impaired, so however we act will affect how they think of the blind and visually impaired community. So, I decided at that point I wanted to be positive and appreciative of others. For example, if someone wants to help me, I welcome the help and just thank them even if I could do it myself.

Jim certainly hasn’t let his RP stop him from doing what he loves. In his spare time, Jim enjoys fishing, hiking, traveling, cooking, wine tasting, and all kinds of sports. Jim’s avid about giving back to others, as he’s very involved with their local Parish, St. Susanna Catholic Church. There he volunteers at the food pantry, helps with a twinning Ministry with a sister Parish in Uganda, and participates in men’s small groups.

Jim also gives back by spending time helping the Foundation Fighting Blindness raise awareness and funds. Jim attended the first Cincinnati/Northern Kentucky Chapter meeting many years ago, but with a busy career and home life, becoming involved was not a high priority at the time. But about ten years ago, Jim started to become more involved with the local Foundation Chapter, participating in meetings and their VisionWalk, and in 2017, he joined the Chapter leadership as the Chapter Vice President.

“Having a support system and community like the Foundation to provide knowledge is vital when you have a retinal disease,” says Jim. “It’s so beneficial to be with people that understand you and what you’re going through.”

Executing creative new ways of fundraising for the Foundation comes easy for Jim. In 2017, shortly after his mother passed away, Jim started making her homemade pickle recipe, selling over 350 pints, with all the funds collected going to the Foundation. And in the fall of 2021, Jim and Peggy hosted a wine tasting fundraiser for the Foundation at their house. Jim worked with Glenn Alexander of Sanglier Cellars, who donated all of the wine, and his brother, John, who is a chef, to create a five-course meal for 37 people, raising over $4,000.

In addition to fundraising, Jim started volunteering with the Foundation’s Professional Outreach team in 2020. Jim’s work with the team helps eye care professionals in the Cincinnati and Northern Kentucky area provide vital resources and information to their patients with retinal diseases to better understand and manage their conditions. Jim’s previous work experience prepared him for this volunteer role, so he was already used to the phone calls and persistence required.

“Because of my experience being diagnosed with RP and being told there was nothing that could be done, I want to make sure other people don’t have to endure that,” says Jim.” I just want to give people the right resources so they know what’s out there to help them. It’s giving people the gift of knowledge, community, and hope.”

Thanks to Jim’s hard work, Luke Lindsell, OD, MD, Jim’s ophthalmologist at the Cincinnati Eye Institute (CEI), has connected the Foundation with many key doctors associated with their practice. Jim orchestrated a Foundation presentation for CEI’s referral group that provided CME credits for 140 physicians, and now they’re preparing a series of presentations to teach their technicians more about retinal diseases as well. Jim is also planning some Foundation presentations with CABVI in the next few months.

“I’m passionate about helping the Professional Outreach team because once you get a hold of the key people, they always agree they could do better for their patients with retinal diseases,” says Jim. “It’s shocking news to be diagnosed, so it’s fulfilling for me to be able to help someone newly diagnosed have a better handoff. In the end, the more people that hear about the Foundation, the more people get involved. Naturally, this leads to more funds being raised to allow for more research, so it’s a trickle effect.”

Jim’s hopeful his work with the Foundation will give someone newly diagnosed the confidence and information they need to stay positive in their vision loss journey.

“I’m optimistic that there will be some kind of treatment or cure that will help me before I get to the point that I can’t see anything,” says Jim. “It won’t be long before treatments are available for a wide range of people with inherited retinal diseases. It isn’t a question if we as a medical community are capable of finding treatments and cures; it just takes a lot of money and time.”