Adam Chodak

Adam Chodak was in his mid-30s, thriving in his career and family life, when he received the life-altering diagnosis of Stargardt Disease. At the time, he was the evening anchor at WROC-TV, the CBS affiliate in his hometown of Rochester, NY, where he lived with his wife, Jill, and their young son, Isaac.  

Adam’s path to broadcast journalism began in high school, where he honed his skills announcing basketball games and delivering the morning PA announcements. His passion for politics and visual storytelling led him to Syracuse University, where he earned a degree in Broadcast Journalism. His career took him to Syracuse, Boston, and Denver before he returned to Rochester to pursue his dream job in his hometown.  

The diagnosis brought an unexpected challenge: how to thrive in a highly visual medium while facing vision loss. Initially, the weight of uncertainty was heavy. However, Adam found inspiration in the stories of resilience he encountered daily as a journalist—stories of individuals overcoming incredible hardships. Their determination became his guide.  

Rather than merely staying the course, Adam has grown, both personally and professionally. Since his diagnosis, he has earned numerous Emmy and Edward R. Murrow awards for his writing, reporting, and commentary. He credits this success to embracing the challenges posed by his diagnosis, which has deepened his empathy and honed his storytelling craft.  

Today, Adam continues to excel as an Anchor and Managing Editor at News 8, balancing his professional accomplishments with his roles as a devoted husband and father. He shares his journey to inspire others, demonstrating how unexpected challenges can become opportunities for growth and transformation.  

Kenyetta McCurdy-Byrd

Kenyetta McCurdy-Byrd is the Chief Operating Officer of REACH Riverside Development Corporation in Wilmington, DE, where she has led the transformation of the organization into the WRK Group—a groundbreaking alliance with The Warehouse and Kingswood Community Center. Her visionary leadership has been instrumental in orchestrating a $600 million revitalization of Wilmington’s Riverside neighborhood, showcasing her dedication to community empowerment. Previously, during her 22 years at West End Neighborhood House, Kenyetta pioneered transformative education and employment programs that remain a gold standard in the community.

As a Black female leader with Stargardt Disease, Kenyetta champions diversity, equity, and inclusion, dismantling systemic barriers and fostering workplace equity. Beyond her professional achievements, she serves on multiple boards, including Cinnaire Lending Group and Delaware Futures, and has been recognized by the U.S. Department of Labor and other prestigious organizations. Armed with advanced degrees in Criminal Justice/Sociology from Saint Joseph’s University and credentials as a SHRM-CP and licensed social worker, Kenyetta exemplifies the principle that “Great Vision Does Not Require Great Sight,” reshaping communities and inspiring others to pursue extraordinary change.

Moderator: Ellen Gould 

Ellen is a double Emmy Award-winning writer and performer of solo musicals. She is currently preparing to launch SEEING STARS, a solo musical film about five women with Stargardt disease and the first film portraying women with partial vision as the heroes in their own stories. Ellen, herself, has been legally blind since age fifteen from Stargardt. 

Inspired by artists like Spalding Gray, John Leguizamo and Anna Deavere Smith, Ellen is one of the first writer/performers to extend solo theater into the musical realm. As a performing artist shas has done leading and featured roles on and Off Broadway, HBO and Public Television. Among her many original solo shows, she is perhaps best known for BUBBE MEISES, BUBBE STORIES, a musical about the immigrant experience, which opened to critical acclaim and a successful Off- Broadway run followed by a multi-year national tour. The made-for-television adaptation of BUBBE MEISES, BUBBE STORIES aired on PBS and won Ellen two Emmys for her work as both writer and performer. To learn more about Ellen, check out her website at www.ellengould.org.

Pair 1: Barbara Duffy & Paul Protentis

Barbara Duffy-Protentis is a lifelong nonprofit executive and a trailblazing advocate for supporting individuals in need. Recognized as the Massachusetts Council of Human Service Providers’ Executive Director of the Year, Barbara has dedicated her career to uplifting underserved communities and driving transformative change in the nonprofit sector. As a mother of four, her advocacy journey became deeply personal when her youngest child was diagnosed at age eight with Stargardt Disease, a progressive vision disorder. This life-altering experience ignited her crusade to ensure her son achieved educational and career success, an endeavor that has shaped her career.  Currently, Barbara is Director of Foundation and Family Relations at the Carroll Center for the Blind.

Paul Protentis is a dynamic entrepreneur and seasoned business leader, with a proven track record of launching, scaling, and selling multiple successful ventures. Currently serving as the President of Home and Health Care Training of New England and the Chief Financial Officer of eSki, Paul excels in fostering innovation and building sustainable enterprises. His entrepreneurial spirit is matched by his dedication to professional growth and community impact, attributes that have solidified his reputation as a visionary leader. Together, Barbara and Paul represent a powerful partnership rooted in resilience, innovation, and a shared commitment to advancing opportunity and equity.

Pair 2: Bhavna & Ethan Tailor

Bhavna first heard of Stargardt’s Disease when her 7 year old son Ethan was diagnosed with the condition in 2015. The diagnosis came as a complete shock and despite the heartbreak, she was keen to do something positive. Driven by the fact that there was no condition specific support group for Stargardt’s, she consequently co-founded the international charity Stargardt’s Connected in 2017 and is currently the CEO of the non-profit organisation with members from all around the world. Bhavna has been actively raising awareness of Stargardt’s disease and fundraising for research since her son was diagnosed and sits on a number of national and international advisory groups for Inherited Retinal Disease research projects. She has been awarded the Prime Minister’s Points of Light Award for recognition for her work with Stargardt’s Connected and was invited to Buckingham Palace in 2024 to thank her for her efforts for setting up the charity. As a mother, she has always encouraged Ethan to get involved in activities and told him early on that she would not let his sight loss define who he is. She is super proud of Ethan and how he doesn’t let the challenges of Stargardt’s stop him achieving and doing what he wishes. When Bhavna isn’t busy running the charity, she enjoys cooking, attending dance classes, going to the gym and socialising with friends.

Ethan is currently 17, studying at school and was diagnosed with Stargardt’s Disease when he was just 7 years old. He has always had a can-do positive attitude and has not let his sight loss hinder him. He has a multitude of hobbies with cooking being one of his passions. He is a phenomenal avid cook and would love to be a TV chef helping to raise awareness of Stargardt’s and doing what he loves best- chatting and cooking! He loves travelling and some of his travel adventures include skiing in Italy and learning to scuba dive in Zanzibar in Summer 2024. Ethan is a Stargardt’s advocate, has won numerous awards and has featured several times in the media, including TV, radio and the press and has even featured in an award-winning short film talking about his sight loss journey called “Ethan’s Story”. He has spoken internationally at conferences about sight loss and Stargardt’s. One of his bigger challenges he has found with Stargardt has been dealing with progressive sight loss but has found learning about assistive technology useful in helping with adaptations that have had to be made. For Ethan, the world is his oyster and in his own words about life he says: “The limit is what you choose”.

Pair 3: Sarah and Lucia Danny

Bio Coming Soon

Moderator: Dr. Michael A. Marciello, M.D.

Dr. Marciello, a specialist in Physical Medicine and Rehabilitation, owns Maragal Medical, PC, in Leominster, MA. Born and raised in Somerville, MA, he was a three-sport athlete at Boston College High School and majored in Behavioral and Neurosciences at Wesleyan University. He pursued medical school at Thomas Jefferson University, conducting research on motor impairments in spinal cord injuries, and completed his residency at Spaulding Rehabilitation Hospital.  

In 2018, he founded a private practice integrating physical medicine, chiropractic, physical therapy, regenerative medicine, and lifestyle approaches to treat chronic conditions. Diagnosed with Stargardt’s disease in 2012, Dr. Marciello became legally blind in 2022 but continues managing his practice. He advocates for awareness of visual impairments, coaches the Boston Renegades beep baseball team, and educates medical students on the functional limits of low vision.

Panelist 1: Rachel Huckfeldt, MD, PhD

Dr. Rachel Huckfeldt is an Assistant Professor of Ophthalmology at Harvard Medical School and a clinician-scientist at Massachusetts Eye and Ear. She completed her MD and PhD training at Washington University in St. Louis with PhD research focused on retinal development. After finishing her ophthalmology residency at Mass Eye and Ear, Dr. Huckfeldt conducted postdoctoral research focused on novel therapeutics in the lab of Dr. Jean Bennett at the University of Pennsylvania followed by clinical fellowships in medical retina (University of Iowa) and inherited retinal disorders (Mass Eye and Ear).  

Dr. Huckfeldt’s clinical practice and clinical research are focused on inherited retinal disorders (IRDs). She is the Director of IRD Clinical Trials at Mass Eye and Ear as well as the Co-Chair of the Foundation Fighting Blindness Clinical Consortium. Dr. Huckfeldt is also the director of the Inherited Retinal Degenerations clinical fellowship at Mass Eye and Ear. 

Panelist 2: Dr. Kenneth Fan, M.D.

Dr. Kenneth Fan is a distinguished ophthalmologist based in Texas, renowned for his expertise in retinal diseases, particularly inherited retinal disorders such as Stargardt disease. A dedicated clinician and researcher, Dr. Fan is driven by a commitment to offering hope and solutions to individuals who have endured hereditary vision loss throughout their lives.  

Dr. Fan’s career is deeply influenced by the inspiring stories of his patients. One remarkable individual—a young engineer who immigrated alone from the Middle East, earned a graduate degree, and continues to thrive despite severe vision loss—embodies the resilience that fuels Dr. Fan’s dedication to advancing care and treatment. This personal connection motivates his relentless pursuit of breakthroughs in research and clinical practice.  

As an active participant in clinical trials, Dr. Fan has contributed to innovative drug development aimed at slowing or halting the progression of Stargardt disease. He takes pride in these efforts, hoping that one day they will translate into transformative treatments for patients.  

In addition to his clinical and research work, Dr. Fan is a passionate advocate for patient education, emphasizing the uniqueness of each individual’s journey with Stargardt disease. His ability to bridge the complexities of cutting-edge science with compassionate care has made him a trusted leader in the field of retinal health.

Panelist 3: Dr. Brittni A. Scruggs, MD, PhD

Dr. Scruggs is a dedicated consultant in the Department of Ophthalmology, specializing in adult and pediatric vitreoretinal surgery and diseases, as well as inherited retinal disorders. With a robust academic and clinical background, Dr. Scruggs combines her expertise in advanced surgical techniques with a passion for treating complex retinal conditions. Her research interests focus on innovative therapies for inherited retinal diseases, aiming to improve outcomes and quality of life for her patients. She is actively involved in mentoring the next generation of ophthalmologists and collaborating on cutting-edge research to expand treatment options. Known for her compassionate approach and meticulous attention to detail, Dr. Scruggs is deeply committed to advancing the field of ophthalmology and delivering exceptional care to her patients.

Moderator: Sam Seavey

Sam Seavey, founder of The Blind Life YouTube channel, is a renowned expert in assistive technology. With over 60,000 subscribers and 800+ videos, Sam provides valuable tips, reviews of assistive devices, and interviews with visually impaired community members. Diagnosed with Stargardt’s at 11, Sam has dedicated 30 years to researching and understanding assistive devices. He’s been featured in prestigious publications and collaborates with tech giants like Google and Apple. Sam currently manages an assistive technology program, offering training and aiming to help everyone live their best blind life.

Panelist 1: Matt Philipenko 

Matt Philipenko is a visionary leader with a deep passion for technology and accessibility. As a Customer Solutions Architect, also known as an M365 Apps Ranger, Matt has dedicated over 11 years at Microsoft to creating innovative, inclusive solutions that empower people around the world. Diagnosed with Stargardt’s disease at 19, Matt uses his lived experience as a visually impaired professional (VIP) to advocate for accessibility within Microsoft, earning him the nickname “Accessibility Bulldog” among his peers.  

Matt’s work is driven by his belief in the transformative power of technology to break down barriers and change lives. His contributions include advancements in Seeing AI and Microsoft 365 Copilot, tools that are empowering millions of users with greater accessibility. Whether inspiring one person or 10,000, Matt approaches every opportunity with relentless energy and commitment, embodying his personal mantra: “Roll over or RISE UP—it’s your choice.”  

A devoted husband to Dana and father to Jaxson (20), Jerzee (18), and Tripp (15), Matt finds strength in his faith and family. Outside of work, he is a passionate advocate for accessibility and a powerful voice for the VIP community, using his platform to amplify inclusion and innovation.

Panelist 2: Jack Duffy-Protentis

Jack Duffy-Protentis, Founder and CEO of eSki Watercraft, grew up in New England close to the water where he fostered a love of recreational water sports. From a young age, he has always had a fascination with engineering. Jack has combined these passions to create eSki and develop a distinct electric personal watercraft product. Jack was diagnosed with Stargardt disease in 2006. Despite the challenges with limited peripheral vision, He has never let it get in the way of achieving his goals. In 2020, Jack received his Bachelor of Science in Mechanical Engineering from Worcester Polytechnic Institute.  Jack continues to chart his own course and his next goal is to find investment to bring eSki to market.

Panelist 3: Stephanie Renberg 

Stephanie is a disability advocate and content creator based in Los Angeles, California. She was diagnosed with a visual impairment known as Stargardt Disease when she was about 9 years old. At that time, she was actually living in Ankara, Turkey, where she began performing in musical theatre. Stephanie recently moved to LA to pursue opportunities for some of her greatest passions, including acting and music. Over the past three years, Stephanie has built her online presence by educating  others about blindness and by sharing her unique perspective.  

Before becoming a full-time content creator, Stephanie received her Bachelor of Science in Sustainable Biomaterials and worked in that field for several years. She’s now using those experiences to build her own business and brand.  Stephanie has partnered with more than a dozen  brands as a content creator, including Amazon and Bumble. Many of the companies she has worked with create  products that are specifically tailored for the disabled community. She has also worked with beauty, fashion, and skincare brands who promote inclusivity. The Foundation Fighting Blindness, My Hero 360 by International Health Media, and Hertz Magazine have all written press articles about Stephanie’s journey. To follow her journey and learn more about Stephanie, check out this link: https://stephanierenberg.com/stephanies-links/