Our mission as the APH FamilyConnect Parent Advisory Board is to make a difference by empowering families with love, compassion, wisdom, and authenticity. – APH FamilyConnect Parent Advisory Board
In October, APH FamilyConnect established the first-ever Parent Advisory Board. This group represents nine different states, various diagnoses, ages of children, many life experiences, and the passion for making a change. The Parent Advisory Board gathered at APH in late March for our first Parent Advisory Board Retreat, an opportunity for APH FamilyConnect to learn where we have room to grow and to hear the needs of the board members’ families and communities. The Parent Advisory Board also had the opportunity to learn about some of the many offerings from APH. They could engage with products, learn about quota funds, and share their stories through their social media platforms.
This powerful weekend allowed the board members to connect, broaden their support systems, and develop a plan to make changes together.
Meet the board on a mission to empower other families and support their children and all children who are blind or low vision.
My son, Brysen, is an 11-year-old with autosomal dominant optic atrophy and plus syndrome. He loves to be outside, travels, and enjoys sports. We continue working with coaches and teammates to understand how to best support his love of sports. This past basketball season was amazing as he felt supported on and off the court. I am hoping to gain extra knowledge on ways to help those who are blind or low vision, along with helping others find adequate support while working on the Parent Advisory Board.
I am a Licensed Clinical Social Worker with experience in hospice, palliative care, and behavioral health, and I’ve spent 11 years as the Family Consultant for Arkansas’ state deafblind program. I believe strongly in meeting families where they are and empowering them by building their family voice. I am also an aunt to my sister’s daughter with Prader-Willi syndrome, a wife, a mom, a mother-in-law, and a grandmother!
I was born in New York, raised in Peru, and moved to Utah in high school. I met my husband in Utah after high school, and we have been together for 16 years. We have three kids: Jordan, Ashton, and Ocean. Ashton was born with septo optic dysplasia, and it changed our lives. We never knew anyone who was blind until we met him, and it was very hard, but I’ve learned so much from him with the way he sees the world with his heart. I also had to learn how to advocate and find the resources to help him thrive. He is now 11 years old and just as independent as any other boy his age. He loves sports like skiing, biking, and skateboarding. He amazes me every single day, and I love being part of this board because I want to help other parents of children who are blind, too. I started sharing our journey on social media and have spread awareness and so much hope to many families of children with blind or low vision. I also have a bachelor’s degree in behavioral science and love to teach parenting classes and work with families through a nonprofit here in Utah.
I am newly retired from a career that covered an almost humorous range from tax assessor to travel agent and from university alumni relations professional to personal trainer. The world of blindness/ low vision opened up to me when our family’s youngest member, my granddaughter, was diagnosed with cortical visual impairment (CVI). Now I find myself in a new place, both helping and being helped through a CVI family support group, benefiting from an amazing array of professional webinars, and extending my compassion for my granddaughter to anyone who finds themself navigating the unique and often difficult challenges of CVI. I am thankful for this unique opportunity with APH FamilyConnect, to provide relevant support that can make a positive difference in people’s lives.
I am a proud member of the APH FamilyConnect Parent Advisory Board and am on a mission to conquer giants. As the son of a combat veteran, I spent my formative years in Germany amidst pivotal historical events like the fall of the Berlin Wall and Desert Storm. Growing up alongside the US Army cavalry, these brave soldiers became my heroes and instilled in me the determination to lead and fight for a cause.
Today, I channel that fighting spirit to advocate for my daughter, Isabelle, and others like her. Born with optic nerve hypoplasia (ONH), a congenital disorder with varying diagnoses; Isabelle has very low vision. Our family began collecting “stones” of knowledge, from early intervention services to understanding intractable epilepsy and seizures. We’ve faced challenges within medical and school systems, defying low expectations at every turn.
Though the giants we face today differ from those of the past, our commitment to the fight remains strong. I temporarily left my career to support Isabelle, homeschooling her while exploring the wonders of western Colorado and beyond. Embracing my role as an ambassador for access and appropriate care, I hold everyone to the same high standards I set for myself and my family.
As a member of the APH FamilyConnect Parent Advisory Board, I aim to help create a better experience for families like ours. Drawing from the stones of knowledge we’ve gathered, I am eager to share hope and encouragement with others on this journey. Let’s tap into the wealth of information and resources available through APH FamilyConnect, knowing that we are not alone in our quest to change the world for many. Join us, and let’s face our giants with confidence and solidarity.
I am Co-Founder and Executive Director of Finance and Administration for Blind Early Services TN (aka BEST), hold a liberal arts degree from Vanderbilt University, a Master of Accountancy degree from Belmont’s Jack C. Massey Graduate School of Business, and certification in non-profit accounting. But first and foremost, I am a proud wife and mother of three—my youngest son was born with legal blindness from an ultra-rare genetic condition. Finding my true calling and passion later in life, I work as a “mom on a mission,” bringing much-needed services and awareness around childhood blindness to my state and the local community. But no worthwhile change is accomplished alone, and partnering with other families and stakeholders has moved the needle on services in my state. With this in mind, I jumped to join the Family Connect Board and look forward to collaborating with this excellent group of individuals and organizations.
I am mom to a spectacular kid, Jamahj “Max” Jones, who was born deafblind and diagnosed with a very rare chromosome disorder. I’m excited to be a part of the board because it gives me a sense of belonging and understanding with people who have experienced some of the same things that I’ve experienced. Also, being on the board allows me to help create change and provide families a space to feel at home and understood. Our testimony is usually someone else’s guide. I am looking forward to all the new things we will be doing here at APH with the blogs and revamping the site, making it more accessible and easier to navigate. I truly believe this is my purpose in life, and I appreciate the opportunity to be a part of such an amazing team.
I am married to Max and live in a city on Galveston Bay called Kemah, near Houston, TX. We have two sons – Tyson (age 21) and Rusty (age 15.) I have enjoyed a career in real estate for 30 years and am a past president of The Women’s Council of Realtors, Bay Area Houston chapter. I am a founding member and past president of our local district’s Special Education PTA. I also served on the district’s Special Education Parent Advisory Council. I participate in a national CVI teleconference hosted by the Lighthouse Guild and am a pediatric Cortical Vision Impairment Society member.
My youngest son, Rusty, is legally blind due to cortical vision impairment. He suffered a traumatic brain injury at birth and has multiple disabilities, including cerebral palsy and epilepsy. I have navigated the public school challenges that can occur for students who are blind/ low vision. In November 2022, we received a successful outcome in a Texas Due Process Hearing for our son. I am passionate about bringing awareness about CVI, the leading cause of pediatric vision impairment in developed countries. My goal is to share available resources and bring public awareness and knowledge about the brain’s ability to change, known as neuroplasticity. I will share that the person’s functional vision can improve through early diagnosis, recognizing unique visual and behavioral characteristics, and appropriate interventions. Because of this walk in life, I have learned about CVI and been fortunate enough to learn from CVI experts; it is my obligation to share this knowledge.
My journey into motherhood began eight years ago when I gave birth to my daughter Brielle. Brielle was born blind from Leber’s congenital amaurosis. It wasn’t until Brielle was eight months old that we officially received her diagnosis. She was the first blind person I had ever met. I knew I had a lot to learn. Like most parents of special needs children, I quickly became not only a mother but also a teacher, therapist, researcher, advocate, and so much more. Every step of the way, I have made every effort to learn alongside Brielle to support her to the best of my abilities. The term “it takes a village” couldn’t be truer when raising a child who is blind/ low vision. We were blessed to have a wonderful Teacher of Students with Visual Impairments who set the stage for having high expectations for our daughter. She shaped our perception of blindness and taught us to raise Brielle without limitations. It has always been important to our family to connect with other children and adults with blindness/ low vision to build a community and support system for Brielle.
I am also blessed to be a mother to our four-year-old son Thomas. A sibling of a child with special needs has such a unique outlook. Thomas has had the advantage of learning acceptance and looking past disability since birth. He sees Brielle as his sister, playmate, and friend. He sees her as equal, which is what we, as parents, advocate so hard for. I hope that through sharing stories and educating others, we can bring awareness to blindness/ low vision and break down barriers. Brielle has taught me and shows the world daily that despite being unable to “see,” she is happy, confident, and capable.
What I have witnessed most in the blindness community is the willingness to help and support one another, whether when struggling as a parent, advocating for your child, or simply navigating the many obstacles our children face. The support from teachers, professionals, and other parents has helped me be a better mother and advocate for Brielle. I am proud to be part of the APH Advisory Board committee, and I hope to give the same help and support to other parents I have so graciously received.