Throughout my life, I’ve pushed my body to do some incredible things—from wrestling in high school to running a marathon to later backpacking in the wilds of British Columbia. But on October 7, 2025, I literally reached new heights as part of a group of nine legally blind individuals who successfully summited Tanzania’s Mount Kilimanjaro. Our group set a world record for the largest number of legally blind climbers to reach the mountain’s summit in a 24-hour period!
Jack with guide on Mount Kilimanjaro
As the biggest mountain in Africa and the highest freestanding peak in the world, Kilimanjaro is challenging for everyone. It took seven days of grit, fatigue, and trust in our guides to reach the point where we began the final climb to the top. The physical strain left my body aching, and altitude sickness gave me one of the worst headaches I’ve ever had. Sleeping in a tent in freezing conditions was wearing, and I quickly missed hot showers. Within twenty minutes of starting our ascent, I lost count of the rocks I had to climb over. Being legally blind required my full concentration. I had to carefully probe the ground ahead with my hiking poles before each step and listen intently to my guide’s directions, alerting me to constant obstacles along the trail.
I also experienced many challenges. On day three, I had severe dehydration and nearly fainted trying to make it to the washroom in the night. Reaching the summit meant experiencing oxygen levels as low as 47 percent, leaving me breathless every few steps. The descent was no less demanding, for hours I slid down loose gravel, followed by two days of climbing down rocky terrain on tired legs.
Getting to the top of this famous mountain was worth it, but I’d be lying if I said I wanted to do it again. You might be thinking this sounds like a great adventure and wonder how you might do something like this. Or, maybe you’re wondering how we safely accomplished the climb.
The answer is simple—with a lot of support from local experts. We partnered with Nana Safaris, a tour company experienced in guiding legally blind climbers, which matched each member of our group with a local guide. My guide, Thomas, was certified by the Tanzanian government and had summited Kilimanjaro 370 times before our climb. Before setting out, we discussed how he could best assist me. Throughout the trek, Thomas carefully led the way, holding one of my hiking poles so I could sense the path ahead. He gave clear verbal directions and, in high-risk sections, had me hold on to a rock or showed me exactly where to step by placing my pole. Thanks to his expert guidance, I always felt safe.
Challenging adventures like this are possible with proper planning and support. If you’re considering climbing Kilimanjaro or visiting Tanzania, Nana Safaris is the most experienced company for supporting people with disabilities. We documented our journey and will be releasing a documentary about our adventure—follow us on Facebook to stay updated.
Wondering what has been served at Dinner in the Dark over the years? Here are the menus!
Dinner in the Dark 2025
This year marked our 10th Dinner in the Dark, held on November 1 at Foxwoods Resort Casino — a milestone we were thrilled to celebrate with new and familiar faces. Together, we dined, danced, and raised our paddles high in support of those living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases.
This year, we celebrated the 10th anniversary of Hope in Focus at a new venue- Foxwoods Resort Casino. With 330 guests to feed, Foxwoods truly outdid themselves. Here are the fantastic meals we had on the menu!
1st Course: Autumn Panzanella Sweet Potato, Butternut Squash, Asian Pear, Dried Cherries, Bacon Lardons, Crispy Brussel Leaves, Friese, Boston Brown Bread Croutons, Maple-Balsamic Vinaigrette
We had one heck of a blast at our 8th Annual Dinner in the Dark gala fundraiser at the Mystic Marriott and Spa in Groton, Connecticut!
We hope you joined us Saturday, October 14th, for this extraordinary menu designed for our event by the Marriott, and to Foxwoods Resort Casino for their in-kind donation. If you did and could not read the menu scripted in Braille, here is the menu that you and more than 270 people enjoyed that evening:
1st Course: Appetizer Orecchiette with Wild Mushroom, Sweet Pea Broth, Prosciutto Crisp, Duck Confit, and Caciocavallo Cheese
Vegan Option: Hummus Falafel
2nd Course: Salad Boston Bibb, Rosemary Pears, Goat Cheese, Dried Cranberries, Olive Oil, Garlic and Parmesan Gluten-Free Breadsticks
Vegan Option: Same Salad without the Goat Cheese
3rd Course: Intermezzo Acai (Sorbet) with or without Prosecco Rosé
4th Course: Entrée Duet Plate Seafood & Short Rib Pan Seared Cod with Leek Fondue and Beluga Lentil Casserole with Braised Burgundy Short Ribs in Braising Sauce, Truffled Potato Duchess, and Asparagus Gratin
Vegan Option: Plant-Based Meatloaf with Mushroom Gravy, Olive Oil Mashed Potatoes and Gratin Byaldi
Dinner in the Dark 2022
Passed Hors d’Oeuvres Butler passed beef wellington with horseradish cream Lemongrass and chicken pot stickers with teriyaki dipping sauce Truffle mushroom arancini
1st Course: Aged Grana Padano Pan Seared 10/20 Scallops over Sweet Potato & Cumin Cured Pork Belly Hash and Butternut Squash & Aged Grana Padano Caponata
2nd Course: Burrata and Tuscan Salad Petit Burrata/Aged Balsamic Reduction/Mixed Olives/Oven Roasted Tomatoes/Grilled Artichokes/Vermont Cheddar Curds/Micro Basil/Passionfruit Caviar/Focaccia Crostini
3rd Course: Duet Plate of Filet & Salmon Cocoa & Coffee Rubbed Filet with Pan Roast Chimichurri Mushrooms and Duck Fat Roasted Potato Lyonnaise Petit Farroe Island Salmon with Peach and Orange Botanical Vodka Beurre Blanc, Black Lentils, Warm Fennel Salad, Cauliflower Puree
Dessert Buffet:
Dinner in the Dark 2019
Passed Hors d’Oeuvres
1st Course: Asian Fall vegetable wrap with dipping sauces
2nd Course: Wild boar & sausage Bolognese with bucatini pasta and shaved fennel
3rd Course: Chicken Tamale
Dessert Buffet:
Dinner in the Dark 2018
1st Course: Pan Seared Scallops Sweet Pea Puree, Shitake and Bacon Hash, Charred Asparagus Tips, Roasted Baby Heirloom Tomatoes
2nd Course: Caprese Napoleon Smoked Paprika, Roasted Herb Tomato, Black Truffle Burrata Cheese, Black Truffle Pearls, Pesto, Balsamic Fig Reduction, Micro Basil
Dessert: Assorted mousse station Raspberry, Blackberry, Nutella
Dinner in the Dark 2017
1st Course: Japanese potato crusted Scallops with cauliflower curry puree accompanied with segments of citrus (grapefruit, lemon, lime) and scent of pine
2nd Course: Warm zucchini soup topped with zucchini noodles and a cool red pepper foam
3rd Course: Beef Wellington with red pepper ragout, grilled vegetables, potato gratin, rosemary scent
Dessert Station: Smoked S’mores – Live action station Graham cracker tart, chocolate ganache, chocolate mousse and torched marshmallow topping
Dinner in the Dark 2016
Passed Hors d’Oeuvres Greek salad skewers with cucumbers, kalamata olives grape tomatoes and a feta-oregano vinaigrette Lemongrass chicken skewer with a mint-ginger rub and pickled plum jam Lobster profiteroles Micro arugula & grapefruit
1st Course: Soup & salad duet plate with roasted chestnut mushroom cappuccino soup & baby spinach salad with pomegranate, candied walnuts and a cider vinaigrette
2nd Course: Smoked duck breast sliced over pumpkin flan, balsamic-fig gastrique
3rd Course: Wild King Salmon en papillote with fennel, arugula, carrots and grapefruit
Dessert Buffet: Pumpkin crème brulee Apple tartlet Mocha pot d’ crème French macaroons
Dinner in the Dark 2015
Reception International cheese display & vegetable crudite & dips
Parmigiano Reggiano, Vermont cheddar, smoked gouda, brie, herb-crusted chevre with artisan breads and gourmet crackers
1st Course: “Popcorn” Shrimp – chili lime marinated grilled shrimp on a skewer served over avocado salad with pickled onions, mini seasoned popcorn & wine
2nd Course: Sunburst Salad Trio served in savory cones with three types of dressings for dipping: sherried green goddess dressing, verjus feta vinaigrette, yuzo wasabi vinaigrette
3rd Course: Moroccan braised beef short rib served with risotto timbale & roasted winter vegetables
Dessert Buffet: Chocolate coffee & donuts Apple cobbler in a mini apple Fizzy fruit shooters Pumpkin chestnut panna cotta in a mini pumpkin
Dinner in the Dark 2014
Reception: Local artisan cheeses with artisan breads and gourmet crackers
Gene therapy is unequivocally the most advanced approach for treating retinal diseases like Leber congenital amaurosis (LCA). Of course, there’s LUXTURNA® which is FDA-approved and has restored significant vision for people with LCA caused by RPE65 mutations. But several other emerging gene therapies are, or will soon be, in clinical trials. Excitingly, some are restoring vision early in human studies.
I had the honor and privilege of moderating an expert research panel at the 2025 Hope in Focus Conference last June in Minneapolis to discuss some of the exciting developments in LCA gene therapies. The three panelists were Kenji Fujita, MD, chief medical officer, at Atsena Therapeutics; Sarah Tuller, JD, chief regulatory officer at Opus Genetics; and Bikash Pattnaik, PhD, a professor at University of Wisconsin-Madison.
Atsena’s LCA1 Gene Therapy Moving into Phase 3
Dr. Fujita delivered the exciting news that Atsena’s LCA1 (GUCY2D) performed very impressively in a Phase 1/2 clinical trial. “We were super-thrilled with the results,” he said. “The gene therapy worked better than we expected.” Thanks to the excellent results, the gene therapy is moving into Phase 3 in a co-development partnership with Nippon Shinyaku which brought a few of their representatives to Minneapolis.
The Phase 1/2 trial enrolled nine adults in Part A (the dose escalation group) to evaluate initial safety and determine the optimal dose. An additional three adults and three pediatric patients were subsequently dosed. Patients receiving the highest dose (all were treated in one eye) had 100-fold improvement in retinal sensitivity, as measured by full-field sensitivity (FST). Some had10,000-fold improvement. Patients were also able to navigate a multi-luminance mobility test (MLMT) in dimmer light (two lux levels lower) after treatment. “This was a transformative difference, on par what we have seen with LUXTURNA,” said Dr. Fujita.
The Phase 3 clinical trial will enroll a larger group of patients and treat both eyes. Some patients will be in a deferred treatment group, serving initially as controls.
The Foundation Fighting Blindness, through its RD Fund, is an original investor in Atsena.
Opus Reports Vision Improvements in LCA5 Gene Therapy Clinical Trial
Opus Genetics, a company established by the Foundation Fighting Blindness in 2021, launched its first clinical trial in 2023 for an LCA5 gene therapy. LCA5 is a severe retinal degeneration diagnosed in a child’s first year. It is also very rare, affecting only about 200 patients in the US.
Opus reported excellent results for the first three patients (adults) in the trial with improvements in FST and virtual maze navigation. The company is now dosing pediatric patients and expects to report on them in the third quarter of 2025. “We are trying to move forward as aggressively as the FDA will allow,” said Ms. Tuller.
She acknowledged the great work of Dr. Tomas Aleman, the principal investigator on the trial, who was also at the meeting and had an engaging discussion with Sarah McCabe, one of the first patients to receive an RPE65 gene therapy.
A CRISPR Therapy is Emerging for LCA 16
Dr. Pattnaik reviewed his team’s emerging CRISPR gene editing approach for correcting the W53X mutation in the gene KCNJ13 which causes LCA16. He explained that the treatment works like molecular scissors to cut out the mutation.
Dr. Pattnaik is using lipid nanoparticles ⎯ which are like microbubbles ⎯ to deliver the treatment into retinal pigment epithelial (RPE) cells. Unlike most other genetic therapies which use engineered viruses to get genetic cargo into cells, nanoparticles have the advantage of being able to deliver therapeutic cargo of any size. Also, they are less likely to cause an immune reaction than viral systems.
Dr. Pattnaik tested the approach in cells and small animal models, and is now evaluating it in a large animal. He said the FDA is very positive about their current development plan.
The CRISPR therapy is currently funded through a grant from the National Institutes of Health (NIH) and was previously supported by the Foundation Fighting Blindness.
Dr. Pattnaik is also a co-founder of Hubble Therapeutics which is advancing a KCNJ13 gene augmentation therapy developed in his lab.
The development of diverse treatment approaches for Leber congenital amaurosis (LCA) is necessary because no single modality will work for everyone affected. While development of gene augmentation therapies (i.e., replacing mutated genes with healthy genes) has much momentum, other approaches also show promise as they move into and through clinical trials. Three of those emerging alternatives were discussed by a panel of experts at the Minneapolis meeting in June. The panel was moderated by Amy Laster, PhD, chief scientific officer, Foundation Fighting Blindness.
Optogenetics is a gene-independent approach for restoring some vision for people with advanced inherited retinal diseases (IRDs) who have lost most or all their photoreceptors (rods and cones), the retinal cells that make vision possible. Ray’s therapies deliver genes that express a light-sensing protein called channelrhodopsin to either bipolar or ganglion cells ⎯ cells that are normally not light sensitive but survive after photoreceptors are lost. In essence, the therapies enable bipolar or ganglion cells to work like a back-up system for photoreceptors. The therapies are delivered by a one-time injection into the vitreous, the soft gel in the middle of the eye. These non-invasive injections are performed thousands of times every day in retinal doctors’ offices for treatment of AMD and diabetic retinopathy.
While Ray’s clinical trials are at an early stage, Dr. Agrawal said early reports for safety and efficacy have been encouraging. Stay tuned.
Sepul Bio’s RNA Therapies for LCA10 and USH2A
In early 2022, the biotech company ProQR reported that sepofarsen, its RNA therapy for LCA10 (IVS26 mutation in CEP290), did not meet its primary endpoint in a Phase 2/3 clinical. That news came despite vision improvements, some significant, for many patients in the trial. The endpoint miss led ProQR to stop development of its ophthalmology assets ⎯ sepofarsen and ultevusen (exon 13 mutations in USH2A) ⎯ and find a company to acquire them.
Mike Schwartz, who was then vice president, global project leader, at ProQR, said, “That was devastating for me, the doctors, and the patients.” He noted that one patient with LCA10 in the trial with only light perception gained enough vision after receiving sepoafarsen to see letters on an eye chart. Another LCA10 patient in the study was able to return to his work as a carpenter after treatment.
Fortunately, a year and a half later, the large European eye care company Théa acquired sepofarsen and ultevursen and formed the Sepul Bio business unit to move the therapies back into clinical trials. Many former ProQR staff went to Sepul Bio including Dr. Schwartz who is now their chief operating officer.
A Phase 2 clinical trial for ultevursen is underway and a global Phase 3 trial for sepofarsen is imminent. Using what was learned from the ProQR trials, the Sepul Bio team made significant changes to designs for the forthcoming trials ⎯ changes they believe will greatly improve chances for success. Mr. Schwartz thanked the Hope in Focus team for providing input from patients for the sepofarsen clinical development program.
Sepul Bio’s RNA therapies, known as antisense oligonucleotides (ASOs), are tiny pieces of genetic material that fix mutations in RNA, the genetic messages that cells read to make protein that’s critical to the cells’ health and function. Both sepofarsen and ultevursen are delivered by intravitreal injections every six months.
The development of cell therapies for IRDs has been challenging for numerous reasons. Therapeutic cells haven’t been easy to source and enabling them to survive and integrate when transplanted into patients’ retinas has been difficult.
As a panelist for the session, I had the privilege of discussing a promising photoreceptor replacement therapy from BlueRock Therapeutics which came out of the lab of stem cell pioneer David Gamm, MD, PhD, University of Wisconsin-Madison. Excitingly, BlueRock’s therapy just moved into a clinical trial for people with RP and cone-rod dystrophy. Dr. Gamm said the cells might at some point be relevant to LCA patients.
The photoreceptor precursors used in the trial came from induced pluripotent stem cells (iPSC). The iPSC were derived from a small sample of mature blood or skin cells from a healthy donor. The cells were genetically tweaked to revert back to a stem cell state. The iPSC were then coaxed forward to develop into the photoreceptor precursors. As precursors, they aren’t fully mature. Dr. Gamm research showed that precursors have the best chance at survival and integration after transplantation.
BlueRock has the backing of two prominent companies: Bayer and Fuji Film. The Foundation Fighting Blindness funded Dr. Gamm’s previous iPSC-related lab research.
The BlueRock trial is moving forward methodically so that investigators can ensure safety for patients and best understand which patients and conditions can benefit most from the approach.
Newborn screening is essential for identifying genetic conditions, such as Leber congenital amaurosis (LCA), at the earliest possible stage. As LCA is an early-onset inherited retinal disease with severe vision loss at birth, early diagnosis is necessary for timely medical intervention, access to specialized care, and critical support for families. According to the National Organization for Rare Disorders (NORD), newborn screenings detect approximately 14,000 infants each year with conditions that could affect their development or survival if left undetected.
The sudden shutdown of the federal committee, the Recommended Uniform Screening Panel (RUSP), which helps guide which conditions are included in newborn screenings is alarming. Without the committee, progress would slow and create a serious threat to the consistency of newborn screening nationwide.
The National Organization for Rare Disorders (NORD) is advocating for the reinstatement of this committee and continued investment in comprehensive, state-wide newborn screening programs. Hope in Focus signed on to a letter of support to HHS Secretary Kennedy. As members of the LCA community, we push our community to recognize the importance of preserving and advancing early detection for rare diseases.
We encourage our community to spread awareness of newborn screening programs and rare disease research.
In March 2024, the company announced vision improvements for the first three adult patients in its Phase 1/2 LCA5 gene therapy clinical trial. Some patients, who had been almost totally blind since birth, can now see and identify objects for the first time. The company has also reported positive safety data for the trial thus far.
Though LCA5 patients have severe vision loss at birth, they have some surviving retinal structure that researchers believe can be harnessed for improved vision using gene therapy.
Known as OPGx-001, the gene therapy uses a human-engineered adeno-associated virus (AAV) to deliver healthy copies of the LCA5 gene to patients’ retinas, augmenting the mutated copies that cause vision loss. The therapy is administered through a one-time injection underneath the retina. Researchers believe gene therapies will be effective for many years, perhaps for the patient’s lifetime.
Opus plans to administer the next highest dose of its LCA5 gene therapy to the next cohort of adult patients in mid-2024. The company also has plans to dose patients as young as 13 years old sometime in the future.
Courtney Coates, Hope in Focus’s Director of Outreach and Development, stated, “We are thrilled that patients in this trial are having early success with the low-dose treatment. We look forward to hearing more as the next cohort is enrolled for the mid-dose.”
The LCA5 gene therapy clinical trial is the first launched by Opus, a company founded in 2021 by the RD Fund, the venture arm of the Foundation Fighting Blindness, which is investing in companies near or in early-stage clinical trials for their retinal degenerative disease treatments.
As someone with a visual impairment, I’ve learned the importance of choosing accessible environments. I recently purchased my first home and wanted to share some lessons I learned about accessibility and the home-buying process.
One of the most important decisions anyone makes when selecting a home is picking a real estate agent who understands your needs and desires. Of course, you want someone who knows your local market and won’t pressure you to make a decision you aren’t ready for. But as someone living with a visual impairment, I also wanted an agent who had experience helping people with disabilities find a home. I started by speaking with a few agents who mentioned having this expertise on their websites, but I did not find anyone I felt comfortable working with.
The Right Agent
Thankfully, I asked a friend who is also visually impaired and who had recently moved. He had an excellent referral for an agent whom I contacted and chose to work with. Because of my real estate agent’s knowledge and experience, he was able to help me narrow my search by eliminating areas with poor public transit or limited businesses within a walkable distance. He also helped me identify features that would make my life easier as a visually impaired person, such as green space for my guide dog, nearby access to trails making it easier for me to run with a guide, easy-to-use appliances, and lots of lighting.
I looked at a lot of properties, and it was overwhelming! As I searched, I also discovered several things that would make my life better. I eliminated properties that required renovations. I’m not handy and have no interest in supervising a construction project. I also excluded properties on busy roads because it’s much easier for me to navigate quieter spaces, and I like to avoid noise as much as possible.
Adding Accessibility
I ended up purchasing a first-floor condo, which provides for trouble-free maintenance. It has a large patio, making it easy to take my guide dog outdoors, and it allows me to be outside as much as possible.
Once I moved in, there were a few things I needed to do to make my new home more accessible for me. Some rooms were not as bright as I wanted, so I purchased the brightest LED lightbulbs I could find. I was also tired of having thermostats that I could not control independently. Thankfully, there is a wide selection of thermostats that you can control with an app on your phone. I got an EcoBee thermostat and found the app fully accessible. Finally, I put Braille labels on all my appliances so I can use them independently. The Braille Superstore is a great place to get a Braille label maker and other stickers/labels to make your home more accessible.
I’m thrilled to have my own home and to live in an accessible and comfortable place. I hope my experience gives you some ideas regarding purchasing a home and how to make it more accessible for you or a loved one.
It can be easy to feel alone living with an inherited retinal disease (IRD). As a kid, only one other person in my school had a visual impairment. Recently, I went on a first date with someone who said, “Forgive me if I ask any dumb questions—I’ve never dated someone who is visually impaired before.” She is not the first person to express such a sentiment on a date with me. In fact, I’m pretty sure I’m the first visually impaired person for every woman I’ve dated. I’m also the first visually impaired colleague, friend, etc., for most people in my life.
Throughout my life, community has played a significant role in helping me feel less alone in these moments. I’ve been fortunate to be connected to groups of other visually impaired people, where I’ve been able to learn from their successes, feel less alone by connecting with others who have similar experiences, and support people who are experiencing challenges I have overcome.
It is common for young people with visual impairments not to feel fully seen or understood by their sighted peers. For many, finding a community of visually impaired peers is the first time they feel they can truly be themselves in social situations. These environments can help them develop more confidence interacting in other social situations.
Having access to such communities has helped me get to where I am today. When I think that accessibility barriers are too significant to overcome, I can look in my community for proof that it can be done. When I feel like I am the only person going through a particular challenge, I can ask my community to find someone who has already overcome it. When I encounter an accessibility = barrier that feels unfair, my community and I can work together to fix it.
Many things can contribute to a visually impaired person’s success, and having a community is one of those foundational things that I encourage everyone with a visual impairment to seek. Of course, a community can only do so much. But I’ve learned that people are resilient, and having a community can help us find and develop resiliency.
Connecting with organizations like Hope in Focus can be an excellent opportunity for you and your family. Learn more about the Hope in Focus Family Connections program, our LCA conference 2025, and other organizations supporting those living with visual impairment on our website at hopeinfocus.org.
Toprak Kulekci is a vivacious, seven-year-old budding ballerina who lives with her parents in Ankara, Turkey. When she was born in 2017, her father, Haydar, a software engineer, and mother, Gizem, an agricultural engineer, had no forewarning that their daughter could inherit a blinding retinal disease. However, with early concerns about her eyesight, they later discovered that Toprak had only five percent vision as a result ofGUCY2D-associated Leber congenital amaurosis (LCA1). Thanks to her parents’ teamwork and tenacity, Toprak is thriving in school, taking ballet lessons and performing on stage with her class.
The Beginning
Haydar credits Gizem with having unique insights about their daughter. One morning, close to the end of her pregnancy, Gizem woke up feeling ill. “She said that something was wrong. The baby usually moved after she ate sweet things, but that morning, nothing happened after breakfast,” Haydar explained. A trip to the hospital resulted in an emergency cesarean section. “The umbilical cord was wrapped around Toprak’s neck eight times. If my wife hadn’t been paying attention to all of their little habits, we would have lost our daughter.”
Then, about a month after her birth, Gizem noticed that Toprak wasn’t making eye contact or closing her eyes when breastfeeding. “We waited about 40 days,” Haydar said, “and then we took her to the doctor. He said not to worry. Her eyes will get better.” A follow-up exam five months later showed no improvement.
Seeking A Diagnosis
The doctor’s evaluation ignited the couple’s problem-solving instincts. Determined to find an answer, they took Toprak to five or six doctors over the next year and a half. “Finally, one doctor said it could be LCA, and this was our first real answer,” Haydar said. “That day, we went to a research center for genetic testing, and several months later, it was confirmed that she had LCA1.”
With little to no information about LCA available in Turkey, the Kulekcis turned to the internet for answers. Haydar was elated when he discovered Shannon Boye, PhD, professor and chief – Division of Cellular and Molecular Therapy, Department of Pediatrics at the University of Florida. Dr. Boye and her team were researching an adeno-associated viral vector (AAV) delivered gene therapy treatment for LCA1. Not only was there someone who had deep knowledge about LCA1, but her lab was also working on a possible treatment. “That night, I emailed Dr. Boye,” Haydar said. “A couple of hours later, I received a response. In that moment, I cried, filled with hope again. It was so important to hear from a doctor on the other side of the world who knew about this disease and might be able to help fix it.” Haydar, who is fluent in English, asked Dr. Boye for her research papers so he could learn more about Toprak’s condition. He also contacted Penn Medicine, regularly sending them Toprak’s exam reports. Meanwhile, Toprak was receiving help at a local rehabilitation center. At the rehabilitation center and home, the focus was on helping her use and “love the light and contrasts” she could detect.
The Inclusive And Accessible Life Association
Through his research, Haydar realized that some organizations in other countries are focused on helping the blind and visually impaired. Others, including Hope in Focus (HIF), were dedicated to providing information and support for specific conditions such as LCA. Excited by the content on the HIF website, Haydar translated some of its articles into Turkish, putting them out to the media and on his blog while asking friends to share them.
Gizem, Toprak, and Haydar
“I realized what other organizations are doing to help the visually impaired, and I thought we needed to do this in Turkey,” he said. “Hope in Focus and Dr. Boye were role models for me, and in 2021, I created the Inclusive and Accessible Life Association. People with limited vision, blindness, or LCA all face similar issues, so our goal is to provide information and resources to anyone who is visually impaired in Turkey.”
Kindergarten Companion
Determined to continually improve Toprak’s quality of life, the Kulekcis’ information needs accelerated as she got older. “About two years before she went to school, I started researching what was available for education and how we could help her,” Haydar explained. “Many blind or visually impaired children in Turkey don’t go to kindergarten because families are not educated about it.”
Toprak’s kindergarten experience provided Haydar with firsthand information he could share with other parents. “When she started school, they told us that they didn’t know what they could do to help her. I took a two-month vacation from my job and sat with her every day in class, helping the teacher understand how to help my daughter,” Haydar said as he described perching on a tiny chair next to Toprak.
“I told the teacher that Toprak could handle everything and that she could help the teacher help her. I didn’t solve my daughter’s problems for her. I taught her how to solve them on her own,” he said. At the end of two months, Toprak told her father that she was fine and he should go home.
Haydar encourages other parents of visually impaired children to send their children to school and not be fearful about what might happen. He emphasizes the importance of parents allowing their children to solve some of their problems. “Many children who are visually impaired are less fearful than their parents. And most of them can manage and do much more than their parents expect.”
Let’s Dance!
Living across the street from a ballet school gave Toprak an unexpected opportunity. Her parents’ discussions about the school’s problematic traffic jams sparked her curiosity. “What is ballet?” she asked.
Toprak ready for Ballet
After doing their best to describe ballet, Haydar found a high-contrast video of a performance to show Toprak. The video resulted in a torrent of questions about how to do ballet, whether there were special clothes for ballerinas, and whether she could take ballet lessons.
“We realized this could be an opportunity for her,” said Haydar. “But we didn’t have any experience with ballet. The school said we could do it but that they didn’t know how to teach her. So, I said, I am here for this problem!” Haydar began attending the classes, helping Toprak stretch and move her body correctly. “We’d get additional help from the teacher to explain how and where to put her foot or leg using words and moving her body into the correct position.” Haydar noted that ballet has additional benefits because visually impaired children often have difficulty understanding where their body is in space. “Ballet is not just visual but also a feeling and understanding of how the body works,” he said.
Toprak’s ballet experience has thus far culminated in two performances with her classmates, each before a thousand people at a performing arts center. “We tested her in the classes, and she hit the mirror a couple of times, but the teacher said not to worry. She can handle it,” Haydar said. Anxious about her first performance, the Kuleckis sat close to the stage in case she fell off. However, Toprak’s classmates successfully guided her when needed.
“When she was on the stage, she was like an angel walking and running around with her friends helping her,” Haydar said, his voice vibrant with joy. “Toprak solved some of her problems, and when she couldn’t see where to sit or stand, she gave a friend her arm. She didn’t give up! Isn’t this the solution for all of us—learning to ask for help and helping each other?”
HIF Family Conference
In 2023, the Kuleckis attended the HIF Family Conference in Indianapolis. Haydar said it was a significant event for them to attend. “We met many people there with LCA and some with the same gene as Toprak. We also met Dr. Boye there, and it was like a dream for us,” he said. “To think that we sent an email in 2019 to someone in the US who gave us answers and information about our daughter’s LCA, and now we see that person is real.”
Life Continues
In Turkey, schools often lack the knowledge or resources to meet the needs of visually impaired students, and Haydar often relies on his engineering background to find solutions. For example, Toprak finished first grade in June of this year. But she at first struggled to see the blackboard. Her father put a camera in front of the board, sending pictures to Toprak’s tablet so she could zoom in on the content. She also reads books using a digital magnifier, and the rehabilitation center teaches her Braille. The Kuleckis are grateful that Toprak’s last eye exam indicated stable vision, at least for now.
Gizem and Haydar work together to forge the best quality of life for Toprak that they can while sharing information and offering support to others through the Inclusive and Accessible Life Association. “We are a great family team! Gizem identifies a problem, I am the problem solver, and Toprak is a hardworking teammate who keeps us learning new things,” Haydar said.
With supercharged energy and positivity, Anthony, born with Leber congenital amaurosis (LCA), shares what it’s like to be blind through motivational speaking and his various social media platforms. His wife, Kelly Anne, helps him plan out what he wants to portray, and then she shoots and edits the videos about their life that later appear on TikTok, Instagram, Facebook, and YouTube. Anthony’s social platforms have become popular as he shares what managing the world without vision is like. As an advocate for increased accessibility, whether he’s changing diapers, making smoothies, or skateboarding, he shares how he tackles a variety of activities without sight.
Anthony Ferraro
Growing up in Spring Lake, New Jersey, the youngest of five children, Anthony was born with only 20/400 visual acuity (profound vision loss). He lost a chunk of vision in seventh grade and then again in his junior year of high school. Now in his late twenties, Anthony’s vision is decreasing daily, and he says, “The light is starting to go black.”
Against the odds, Anthony became a champion wrestler in high school and was the subject of an award-winning film, A Shot in the Dark, documenting his attempt to win a state wrestling championship in his senior year. In a previous interview with Hope in Focus, he said, “Wrestling has taught me a lot of things. It taught me hard work, that things don’t happen overnight, discipline, and how to deal with loss. It helped me prepare for life.”
Anthony aims to participate in the Los Angeles Paralympic Games in 2028 in Judo. The pivot from wrestling to Judo resulted from a concussion that ended his wrestling career in college. However, this event opened the door to pursuing Judo when the U.S. Paralympic team asked him to train for the team.
Open about his life, Anthony talks about struggling with depression. “When I was 19, I got so depressed that I checked myself into a mental health hospital. I learned a lot about mental health and not bottling things up. I got to work on myself and learn about what I was feeling and going through,” he said. “When I was 21 or 22, I started accepting the fact that I was blind and started using my cane and the resources that were around. That’s when my whole life changed. Soon after, I met Kelly Anne!”
An accomplished musician and skateboarder, Anthony is game to try almost anything. He and Kelly Anne have a baby girl, and some of his videos demonstrate how he cares for her. One example is his TikTok video “How I Find My Baby as a Blind Dad.” With unending zeal and courage, which Kelly Anne fully matches, Anthony propels himself into life.
Come meet Anthony and his family at Dinner in the Dark 2024 and hear him speak about his personal experiences and hopes for a possible treatment for LCA, tickets are available at hopeinfocus.org/dinner. Learn more about Anthony and connect with him on social media at asfvision.com.
