The purpose of the ANA Patient and Family Advisory Board (PFAB) is to provide persons with aniridia and their family members a pathway to actively engage with ANA, identify opportunities for patient community engagement, and provide feedback from a patient perspective regarding the plans, activities, and patient-oriented materials and programs of ANA.
The Patient and Family Advisory Board is drawn from the following groups in the North American aniridia community:
- Persons with aniridia (“patients”)
- Family members of persons with aniridia
- Official representatives from partner and stakeholder organizations
- ANA Board of Directors
Justin lives in Sandy, Utah with his wife and two kids–ages 13 and 6. Justin inherited his aniridia from his mother; his son inherited aniridia as well. Justin earned a Bachelor’s Degree in Informational Technology. He works as a data analyst in a large healthcare organization, and his work helps improve population health through value-based care. In his spare time, Justin enjoys hiking, traveling, and a wide variety of hobbies.
Being part of a 3-generation aniridia family, I hope to share insight from my family from birth through late adulthood and highlight the improvements in experiences with more current technologies and access.”– Justin Nelson
Adison is 19 years old and from Latrobe Pennsylvania. She was born with Aniridia and Nystagmus. She is currently a sophomore at Robert Morris University studying Early Childhood and Special Education.
I am honored to be a part of the PFAB. I want to use my past experiences and knowledge to support families with aniridia and educate others about aniridia. I am hoping my part in this organization will reach someone and help make a positive difference for them.– Adison Lemmon
Michael spent most of his life in New City, N.Y. and now has moved across the Hudson River to reside in White Plains, N.Y. with his mom, Bobbi. After graduating from the Wharton School of Business at the University of Pennsylvania, he worked in television. During his career, he spent time at various entities in the NBC family with ultimately becoming a Segment Producer at CNBC. His interests vary greatly, but he has a passion for game shows & sports. He was a Teen Week winner on “Wheel of Fortune”. He is a die-hard baseball fan – always rooting for the New York Yankees as a season ticket holder. He was born with aniridia and he does the best he can to function with the disease. Fortunately, he only deals with the ocular effects, but he has come to learn about the many different aspects of the disorder.
I look forward to keeping an “eye” on the goal of helping other patients like myself as I have great empathy for all those suffering with more systemic symptoms.– Michael Schain
Barbara is a mom of three young girls. Her three year old was born with congenital aniridia as well as other eye conditions. She is originally from Italy but have spent 20 years living in other parts of the world because of her job in the humanitarian world. She currently lives in Guatemala where there is little to no information/awareness on aniridia. She would love to have more people living in this part of the world being part of this network to make sure that patients and parents of kids with aniridia are able to make informed decisions about their health and kids’ health, but also to ensure that professionals are aware of the correct medical decisions when treating aniridia patients.
I am interested in serving on the Patient and Family Advisory Board because my youngest daughter was born with congenital aniridia and several other eye conditions and would like to support other parents with kids with a similar condition, whilst making sure that the correct and latest information/research is available for all.– Barbara Gala
ANA Board Members
ANA Board Members Shari Krantz, Susan Wolfe, Kelly Trout, and Janelle Collins are also members of the ANA Patient and Family Advisory Board. See the ANA Board of Directors page for more information about Kelly, Shari, Susan, and Janelle.
Rosalyn lives in Ontario, Canada. She has a Bachelor of Education with a major in Physical Education and has an extensive aquatics background with a passion for recreation. She is a certified Eden Associate, a Level 2 Dementia Interpreter and a member of the Ohio Recreation Therapy Association. Currently, she is the President of her local Kiwanis Club and is working towards creating a global caregiving consultant business. She is connected to aniridia because she found out when going for her Learner’s License she had aniridia.
A Poem comes to mind:– Rosalyn Fast
There is no thrill in easy sailing
When the skies are clear and blue.
There is joy in merely doing things
That anyone can do
But there is some satisfaction
Which is mighty sweet to take
When you reach a destination
That you thought you couldn’t make….
These words are words of wisdom , grit and always looking upward and onward – Hope, Perseverance, Determination
Grace lives in northeast Oklahoma. Her daughter has Aniridia. She likes to spend her free time creating learning materials and activities for her daughter and other members of the blind and visually impaired community. She shares those things on her Facebook Group, Visually Impaired Play and Activities. She is passionate about helping and teaching new parents of blind and visually impaired children and welcoming them to the community.
I am so thankful for the information and advice that I have received from the Aniridia community since my daughter was born, and I just hope to be able to connect with and help families in our Aniridia community now that I am in a position to be able to.– Grace Ball
Grayson was born and raised in Virginia. He was diagnosed with sporadic aniridia at 2 months old and started using eyedrops to treat glaucoma at age 6. While having low vision, he enjoyed sports, to include basketball, tennis and swimming throughout elementary and high school. Grayson graduated from the University of Virginia in 2002 and subsequently completed graduate school at The George Washington University. He has worked for the federal government since 2006. Grayson and his wife Suzanne have a daughter Ellie, who also has aniridia. They enjoy spending time with family and friends around their home near Washington, DC. In January 2021, Grayson joined the Board of The Vision For Tomorrow Foundation, a nonprofit organization which funds aniridia research and provides free support to individuals living with aniridia. He is VFT’s first Board member with aniridia and currently serves as Vice-President.
I am excited to have the opportunity to connect with and support the aniridia community by serving on ANA’s Patient and Family Advisory Board. ANA’s work is important in giving me, my daughter, and others living with aniridia so much hope for better treatments, care, and support. And in my position as a Vision For Tomorrow (VFT) Board member, this provides VFT with another way to foster collaboration with ANA.– Grayson Chinn
Gabriela lives in Ecuador with her family. She has a young daughter with aniridia. Gabriela has assisted ANA and Aniridia Spain with translating documents regarding aniridia into Spanish. She is passionate about getting accurate information to the Spanish speaking Aniridia community and medical community in Central and South America.
For more information about the Patient and Family Advisory board, please see the Patient and Family Advisory Board Policy.