People with NF2 (Neurofibromatosis type 2) live in fear of losing their hearing, their eyesight, their mobility, or their lives to this disease and they spend a lifetime undergoing complex tests and surgeries. NF2 BioSolutions is a non profit organization that is helping to develop a gene therapy cure for NF2. They have brought hope to the NF2 community. Please help us raise awareness by telling Lauren's story!
We stand behind NF2 BioSolutions, the nonprofit, that’s working toward the cure for this rare genetic disorder. I’m calling out to everyone to help spread awareness so we can fund the research needed. NF2 BioSolutions consists of people that have been directly or indirectly affected by NF2. While they have full-time careers (doctors, scientists, journalists, Mother’s, father’s, etc) and should be spending their time caring for their loved ones, they are volunteering their time for the greater good for ALL people. It’s time to take a stand and #endNf2
Hi Ellen. My name is Stephanie Ham. I'm a First Grade teacher and I've been working with my students teaching them about random acts of kindness and today I want to add a random act of kindness to the wall for myself. It's to contact you for my friend Lauren, she's a friend and colleague here at Inglewood Elementary with me and she's been recently diagnosed with NF2. It's a super rare genetic disease that allows tumors to grow in her brain, in her spine and in her ears. Currently she has three tumors on her spine and some also in her ears and she's lost hearing in one of her ears and isn't sure if and when she's going to lose hearing in the other ear. 95% of individuals lose hearing from this rare disease and I'm here today to ask you to help me so that I can help her.
We want to bring awareness about the disease; there is a company called NF2 BioSolutions that's working on a cure but due to lack of funding because there is no awareness we are just not getting there. So Lauren is a mom of two, she wakes up every morning not knowing if she's going to hear her children when she gets out of bed. So, my heart goes out to her and this random act of kindness is for her.
We all love you, Lauren and we want you to pull through and we all hope that we all find a cure for all people that have this rare genetic disease. Ellen, I hope to hear from you. Thank you.