Nicole Zeitzer Johnson
My blogs
| Gender | Female |
|---|---|
| Industry | Non-Profit |
| Occupation | Executive Director |
| Location | Port Washington , New York, United States |
| Introduction | I'm the mom of Josie and big brother Tanner. I’ve been keeping this blog to chronicle Josie's journey with a rare genetic disorder called FOXG1 Syndrome. I was told in 2014 that Josie will never walk or talk or take care of her basic needs and will have seizures and medical complications. I aim to change this. In 2017, I co-founded the FOXG1 Research Foundation and we are driving the science to find a cure for FOXG1 Syndrome. I have a strong feeling that this will Josie's story to tell one day. I moved this blog over to my children’s book website www.JoyfullyJosie.com - I also started an education program to spread disabilities inclusion across schools and foster empathy. www.livejoyfullyeducation.com Josie is so loved and as far as I'm concerned, just like her brother, she is perfect, but she deserves more. All children with FOXG1 syndrome and countless rare diseases do too. Side note: I'm also a huge music lover and I'll probably add a music reference in each post. Thank you for reading about and coming along Josie's journey. |