Hello CTNNB1 families. Welcome to the Parents Place. I hope this soon becomes your go-to place to find resources, connection, and support. My name is Annie Wood and I am the vice president of CSAW. My son Preston is 10 years old and in 4th grade. He received his CTNNB1 diagnosis at age 8 after many years of having no answers. I am a school counselor and my husband, Chad, works for John Deere. Preston has three siblings- Jameson (8), Finley (4), and McKinley (2). We live on a farm in rural Illinois.
Our family attended our first CTNNB1 meet-up hosted by Tony and Jennifer Rose in the summer of 2019. The connections we made and the experience we had there will stay with me forever. I will be forever grateful for the amazing family support that we have (pictured above at meet-up.) However I soon realized how much we need our extended CTNNB1 family to get through the challenges that we face raising our rare children. In the fall of 2019 we hosted three other CTNNB1 families. It was an instant connection when we met. (pictured below) CSAW hopes to provide more opportunities for meet-ups in the future, post Covid-19.
We at CSAW knew we wanted to provide more for our families. The usual challenges of parenting are compounded for parents and primary caregivers of children with needs that are special. Here we plan to provide help with the many challenges we face such as coping with the emotional demands, advocating for appropriate school interventions and accommodations, and what we need to be ready for when they turn '18'. These are just a couple examples of some important topics that will be addressed in some upcoming roundtable discussions. We will make sure to alert you on Facebook when these roundtables are shared. You are going to get an opportunity to hear from other board members and families too.
We will have many feelings throughout our lives as caregivers to our children, but the one thing I never want you to feel is alone. Please know that you can reach out to me by email anytime annie.wood@ctnnb1.org. Please feel free to also email about topics you feel we need to discuss.