BEST Together Podcast

Mae Lane-Karnas is a 14-year-old diagnosed with CVI who loves braille, math, and art. Due to CVI, Mae has a host of visual challenges that cause her to function at the level of legal blindness, even though her visual acuities are typical. In the past year, Mae has co-presented to the Principals of Schools for the Blind and the Association for Education and Rehabilitation of the Blind (AER) on use of Nemeth code for middle school students with CVI. Mae co-organizes an ongoing CVI discussion group at Smith Kettlewell Eye Research Institute and serves on the board of the National Federation of the Blind of Vermont. Katie Lane-Karnas is Mae’s mother and the primary homeschooling parent to her two daughters in rural Vermont. When Mae was diagnosed with CVI two years ago, Katie began facilitating Mae’s learning in braille, Nemeth code, AT, O&M, and the ECC. Katie authored a paper, “A Case Study on CVI, Reading, and Braille,” that has been accepted for publication in 2024 by the Journal of Visual Impairment and Blindness on her family’s learnings from Mae’s experiences. Both Katie and Mae join us on this month’s episode of the BEST Together podcast to share their lived experiences with CVI.

Dr. Grace Ambrose-Zaken is the President and CEO of a nonprofit organization called Safe Toddles. She is a recently retired Professor of Special Education at Hunter College in New York where she taught Orientation and Mobility Specialists for over 25 years. And finally, she is the creator of a pediatric belt cane made to provide children who are blind or visually impaired a solution for walking independently and safely.  In this month’s episode of BEST Together we chat with Dr. Ambrose-Zaken about the field of orientation and mobility, research and philosophies around cane use in young children, and challenges facing the field.

Stacey Chambers is a Teacher of Students with Visual Impairments (TVI) living in Texas. She is also the founder of The E.C.C. and me, an LLC and website that offers a monthly newsletter, trainings, optional membership program, and free resources all pertaining to the Expanded Core Curriculum, the additional curriculum of nine areas that are taught to, or explored with, students who have vision impairments or are blind. "​The E.C.C. & Me partners with teachers and families to make assessment and teaching E.C.C. skills collaborative, practical, and fun for all learners with a visual impairment."

Kristin Smedley is the best selling author of Thriving Blind: Stories of Real People Succeeding Without Sight and Brilliantly Resilient: Reset, Rise and Reveal Your Brilliance. A recognized expert in the blindness and rare disease communities, Kristin won the highly regarded Champion of Hope Award and was named an Ambassador for the National Organization of Rare Disorders. Kristin is a popular, in demand speaker who has been invited to share her message internationally.

Rachel Bennett is an Assistant Director at the CVI Center at Perkins, where she leads CVINow.org and parent advocacy and support. As parent to Henry, who has CVI and other disabilities, she knows the duality that comes with being a disability parent—feeling overwhelming love and, at the same time, grief and pain. In 2020, Rachel completed UMass Boston’s CVI Certificate program. Before joining Perkins, Rachel was a special educator and secondary instructional specialist in Maryland. Rachel joins us for this month’s podcast conversation to discuss her perspective both as parent of a child with a visual disability and advocate for other families of children diagnosed with Cortical/Cerebral Visual Impairment.

Dr. Kirk Adams is the Managing Director of Innovative Impact, LLC, a consulting company aimed at accelerating inclusion of people with disabilities into the workforce. Dr. Adams is also the former President and Chief Executive Officer of the American Foundation for the Blind (AFB) and a longtime champion of people who are blind or visually impaired. Dr. Adams frequently serves as a keynote speaker at conferences across the country, spreading his commitment to creating a more inclusive, accessible world for Americans with vision loss. He has consulted with top leadership at Google, Facebook, Microsoft, and other high profile tech-oriented companies to discuss topics ranging from product and digital accessibility to civil and disability rights. Having lost his own vision at age 5, in our latest podcast episode, Dr. Adams shares his personal story and helps to shine a light on the importance of braille.

Our other podcast guest, Daniel Lubiner, is a 25-year veteran teacher of students with disabilities and a teacher of the arts for blind and low-vision students. He founded a nonprofit organization, The TouchPad Pro Foundation, with a mission to distribute The BrailleDoodle, an inexpensive braille learning device and a tactile Science, Math, and Art tool. It allows someone to write and create and feel as they go. In this episode, Daniel describes the BrailleDoodle and how he plans to get one into the hands of braille and tactile learners across the world.

Victoria Watts is a disability rights activist, entrepreneur and mother. When her youngest son, Cyrus, was born visually impaired, Victoria had just launched her own product line, VictoriaLand Beauty. After realizing that those with blindness or vision impairments have no way of easily identifying consumer product packaging, she launched the CyR.U.S. System of Raised Universal Symbols, a proprietary tactile recognition system comprised of a set of raised trademarked symbols, making packaging accessible with a simple touch. Recently, Victoria launched her newest invention, Touch Tags, which are categorized by product type and can be placed on any product at home. Victoria is on a mission to make accessible packaging the norm rather than the exception and we could not be more supportive of her mission.

In this month's episode of the BEST Together Podcast, we sat down with Kelsey Fernandez, Regional Manager, Puppy Raising Services and Katie Perez, Manager, Children and Teen Programs from Southeastern Guide Dogs. In our conversation we discuss the process of training a guide dog, fostering a guide dog puppy, dog programs for children as young as 5 years old and etiquette for interacting with guide dogs in public among so much more! 

Sam Seavy is the host of a popular You Tube Channel called the Blind Life that highlights and reviews accessible products, new technologies and apps made for the blind community. Sam is himself legally blind due to a vision impairment diagnosis called Stargardt disease which causes one to progressively lose their central vision. Since he started his You Tube channel in 2013, Sam has gained more than 49,000 subscribers and over 6 million views. Listen to our latest episode of the BEST Together podcast where we talk to Sam about his diagnosis, life growing up, what led him to create the Blind Life and of course, exciting new developments in accessible technology for the blind community.