In Honor of Karen Atlan
Friends, today my family and I are asking for your help. My daughter Karen is 11 years old, and she was diagnosed 5 years ago with a very rare disease that causes tumors to grow on her nervous system. It is called Neurofibromatosis type 2 (or NF2) and it effects 1 in 33,000 birth, we have met the best doctors in USA. France and Israel so far, no working treatments have been discovered for NF2.
Thankfully her tumors (brain and spine) are not cancerous but they grow slowly and can compress cranial nerves. On the 20th of September 2018, she is having her first brain surgery in Paris to remove one tumour on her vestibular nerve that grew a lot in the last year, hopefully the surgery won't impact her hearing and facial nerve, we will know in the next few weeks.
Karen is currently looking at a lifetime of chemotherapy and surgeries that will sever her nerves. These strategies for battling NF2 will only temporarily postponing the growth of her tumors with multiple side effects. But we have hope for another option.
I am part of the launch of NF2 BioSolutions non-profit organisation, and I believe strongly in it. It is a new foundation created by mostly medical personnels and bioscience researchers that are themselves (or a family member) directly impacted by NF2 disease. The goal of this foundation is to fund research in gene therapy and immunotherapy in order to find a cure or a better option for preventative treatment for NF2. So far, there is very little research in this area currently focusing on gene therapy or immunotherapy as a way to treat NF2. Today, we are at a crossroad where critical knowledge and technology have been acquired in changing genes that cause diseases using harmless viruses to replace the defective DNA. Other rare disease foundations have successfully funded and pushed for a gene replacement treatment of their rare diseases, and NF2 BioSolutions wants to follow that same model.
Please help me find a cure for Karen and all other NF2 patients by donating to NF2 BioSolutions, following us on Facebook, and helping to raise awareness. I will be eternally grateful for any amount you are able to give. Thank you for your thoughts, prayers, and support of Karen and our family.