TEAM
Meet Our Board Members
The GNB1 Advocacy Group Board is made up of parents of those living with the GNB1 mutation. This non-profit organization is truly dedicated to their cause, not only overseeing the organization but also actively participating in all programs. Their hands-on approach is a testament to their commitment and passion for making a difference in all of our children's lives.
President
Stephanie Normand
My name is Stephanie Normand. I am the President of the Board. I’ve been successful in business as a Director of Operations and a Contracts Administrator for many years. In 2020, I had a COVID wedding where only my husband and I were in person and everyone else was virtual! In 2021, I gave birth to a beautiful, healthy baby girl named Adalynn. By age 4 months, she still couldn’t hold her head up, so we knew something was wrong. Well, as a first-time mom, I didn’t know, but my husband and her pediatrician did. This sent me on a quest to help her, and to get answers. On her 17-month birthday we met with her Neuro-Geneticist and got the answer: GNB1. And this seemed like a non-answer! There’s no treatment, no cure? There are very few people worldwide?! To say my world was rocked would be an understatement. But, like always, I had a challenge, and I got started working on it. After joining the GNB1 Facebook page, I discovered that there were researchers interested in working to better understand and help kids like my daughter- but they needed the parents to get organized. Say no more- organization is what I do! However, I knew I couldn’t do this alone. Within a couple of weeks, I had met Carolina, Kadi, Lisa, and Yaneiry. Finding my tribe of determined, powerful Moms who would tackle this head on with me has helped in so many ways. We each have our specialties, and we lift each other up on the toughest days. My daughter is one of the more severe cases- she requires complete care, can’t speak or do anything for herself. But she loves to laugh, and try new foods, loves to be read to, and I’m hopeful. I’m proud of the work we are doing in the GNB1 Advocacy Group, look forward to all of the things we will do together, and can’t wait to meet all of the people we will add to our team, as well as all of the families in our group. I am inspired by the discoveries and advancements being made in science every day. And I will always continue to pray that we will find a cure in my daughter’s lifetime.
Treasurer
Lisa-Marie MacLean
Lisa is originally from Trinidad and Tobago and currently resides in Austin, Texas. In 2022, she and her husband made the courageous decision to sell their home and belongings, leaving behind the comfort of family and friends to pursue a better life and access to resources in the United States. Together, they are raising two children: a 12-year-old daughter and an 8-year-old son, Isaac, who was diagnosed with GNB1 in 2019. Isaac's diagnosis came after years of uncertainty and countless medical appointments, as Lisa and her family sought answers for why he was not meeting developmental milestones as a baby. After three years, whole exome sequencing finally provided clarity, though doctors described the rare genetic disorder as "the lottery of diagnoses," leaving the family with more questions than answers due to the limited research available. Feeling lost and overwhelmed, Lisa found solace and community in a Facebook group dedicated to parents facing similar challenges with GNB1. This connection provided her with much-needed support and hope. Motivated by her own experiences, Lisa joined the board of the GNB1 Advocacy Group, where she aims to actively contribute to the organization's mission of offering comprehensive resources, advocacy, research, and community support for families affected by GNB1. The group also strives to advance research that will ultimately benefit children with this rare condition. Currently pursuing a graduate degree in Marriage and Family Therapy, Lisa plans to specialize in supporting families with children with disabilities. Her academic and professional journey is deeply rooted in her personal experiences and her desire to offer tailored therapeutic support to families navigating the unique challenges of raising a child with rare disorders. Lisa is dedicated to creating a compassionate and supportive environment where families can find the strength and resources they need to thrive. Through her work with the GNB1 Advocacy Group, she is committed to empowering parents and caregivers, helping them build resilience and hope as they face life's challenges.
Marketing Chair
Yaneiry Mayard
Yaneiry Mayard is a driven interior designer from Dominican Republic who currently serves as a Business Development Manager in New York for the corporate, healthcare and education sectors. As a mother of four—two boys and twin girls—Yaneiry balances her professional life with her role as a dedicated mother. One of her twin daughters has GNB1, a condition that has inspired Yaneiry to take on an additional mission. Beyond her work, she ministers as a worship leader in the Assembly of God in Baldwin NY. Driven by her personal experiences, Yaneiry has joined forces with other committed parents to provide resources and support for families, while also working to advance research for GNB1.
Scientific Advisory Chair
KaDiatou diallo
Kadiatou is a dedicated mother with a career in public health and research. Kadiatou currently lives in the United States with her husband and four-year-old son, Noah, who was diagnosed with GNB1 in 2021. Noah was 22 months old. As a first-time mom, Kadiatou patiently waited for her son to reach his developmental milestones. She believed, as her family and friends did, that Noah was just a bit delayed since he was born at 37 weeks and that he was growing at his own pace. Genome sequencing later confirmed that Noah would indeed grow at his own pace, as a child with a rare genetic mutation causing severe developmental delays. As many parents with children of rare conditions, Kadiatou and her husband searched for more information on GNB1 and answers to the many questions they had. This connected her with researchers and parents working towards better understanding this newly discovered mutation. Kadiatou decided to utilize her research and public health experience to support researchers in learning more about GNB1 and eventually exploring treatment options. Kadiatou is also passionate about advocating for children and adults with GNB1. By joining the GNB1 Advocacy Group, she has found her community of caring and committed parents and family members. She is hopeful that her son will be well supported in the future. Kadiatou holds a master’s degree in public health, with a focus on global health. She previously held positions as a Data Analyst at Johns Hopkins University and New York University Langone Health. Currently, Kadiatou devotes her time to being a full-time caregiver for her son and furthering her education in various fields.