NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. With no cure and few treatment options, everything felt hopeless. Then I started to realize how courageous my son/ daughter is; he/she was fighting NF with strength, dignity and even a of humor! Well, I stopped being hopeless and became a fighter, too. I joined forces with the Children’s Tumor Foundation (CTF), the largest a non-profit organization in the country committed to ending NF through research. CTF believes that full-scale collaboration will lead to solutions for NF. That alliance includes not only clinicians, researchers and other experts in the field, but patients and their families, too. May is NF Awareness Month and I invite other members of the (name of city/ town) community to fight with our family by learning more about NF at . Sincerely, Full Name Phone number Sample 2 To the Editor: Imagine being told that you have a disorder for which there are few medical treatments and no cure. That’s what happened to me (number) years ago when I was first diagnosed with neurofibromatosis (NF). NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. With no cure and few treatment options, everything felt hopeless. Until I found the Children’s Tumor Foundation, the largest a non-profit organization in the country committed to ending NF through research, and got involved in the NF community. I met tons of other people just like me, people living their lives and fighting NF with strength, dignity and even a sense of humor. NF is a rare disease, and one of the most important things we can do is raise awareness and talk about what it means to live with the NF. This is why I’m recognizing NF Awareness Month in May, and why (identify a local landmark that is Shining a Light on NF, a proclamation in the area or an upcoming event). I invite other members of the (name of city/ town) community to fight with me by learning more about NF at .
NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. With no cure and few treatment options, everything felt hopeless. Then I started to realize how courageous my son/ daughter is; he/she was fighting NF with strength, dignity and even a of humor! Well, I stopped being hopeless and became a fighter, too. I joined forces with the Children’s Tumor Foundation (CTF), the largest a non-profit organization in the country committed to ending NF through research. CTF believes that full-scale collaboration will lead to solutions for NF. That alliance includes not only clinicians, researchers and other experts in the field, but patients and their families, too. May is NF Awareness Month and I invite other members of the (name of city/ town) community to fight with our family by learning more about NF at . Sincerely, Full Name Phone number Sample 2 To the Editor: Imagine being told that you have a disorder for which there are few medical treatments and no cure. That’s what happened to me (number) years ago when I was first diagnosed with neurofibromatosis (NF). NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. With no cure and few treatment options, everything felt hopeless. Until I found the Children’s Tumor Foundation, the largest a non-profit organization in the country committed to ending NF through research, and got involved in the NF community. I met tons of other people just like me, people living their lives and fighting NF with strength, dignity and even a sense of humor. NF is a rare disease, and one of the most important things we can do is raise awareness and talk about what it means to live with the NF. This is why I’m recognizing NF Awareness Month in May, and why (identify a local landmark that is Shining a Light on NF, a proclamation in the area or an upcoming event). I invite other members of the (name of city/ town) community to fight with me by learning more about NF at .
Toolkit_Letter_to_the_Editor.docx