Collective Bias, a community of bloggers, reached out to their writers to tell them about NF Awareness Month. Keep reading to see how everyone connected with the campaign through their own personal experiences, including, as it turns out, two families with direct connections to NF, a woman who has a friend living with NF and a woman whose son goes to school with an NF Hero. One blogger even found a way to connect through her own experience as a parent who lost a child.
Embracing the true spirit of the I Know a Fighter campaign, these writers draw attention to the inspirational and remarkable stories of those living with NF, who are fighters in every sense of the word, and those who support them in their fight.
A few months ago, a question was asked in the private Social Fabric community if anyone had Neurofibromatosis (NF). I think I responded in about 30 seconds. Despite that NF is more common than Cystic Fibrosis, I never hear anyone talking about it, let alone knowing what it is. I have NF-1.
You probably don’t know what NF is, am I right? Ok, first off, don’t Google yet. I don’t want you to freak out. Because chances are you will. So just do me a favor… Please. Just keep reading.
I’m going to be honest, writing this post was harder than I thought it would be, and I’ve probably started it a dozen times. It’s strange to write openly about a disorder I have that not many people know about, or know that I have.
Click to keep reading on I Am the Maven.
“And, just so you know, your daughter has a tumor attached to the nerves in her gum, When we remove the tooth, we plan to remove the tumor and biopsy it.” I had taken my daughter in for a routine dental checkup on her braces and had been informed we needed to remove a tooth. I had expected the tooth removal, but the tumor came as a shock. No one is prepared to hear “tumor” and “your child” in the same sentence. I wish this had been the only time I heard this, but I’ve heard it again and again. Blame it on bad genetics like my daughter does, but she has been diagnosed with a series of invisible (and not so invisible) illnesses. Every day is a struggle to accomplish those little things none of the rest of us think about; like walking or breathing. As we learned more about her illnesses over the years, we learned these tumors can arise from a condition called neurofibromatosis, or NF.
Click to keep reading on Simple Southern Mom.
Have you heard of Neurofibromatosis (NF)? Probably not. Unless you, like me, know a fighter with NF.
Neurofibromatosis is a rare genetic disorder, characterized by cafe-au-lait spots on the skin, and tumors that grow along under the skin along nerve pathways, including spinal nerves, the brain, and cranial nerves. 1 out of every 3,000 births will have Neurofibromatosis, and parents who have NF have a 50% chance of passing the disorder on to their children.
I don’t know about you, but I think those numbers are way too high.
I hadn’t heard of NF at all, with the exception of a very quick mention of the disease in nursing school, until I met B. At the time, I had been attending a church group at the time that met during the week, and B was always there.
Click to keep reading on Only Passionate Curiosity.
When you are a little girl you often dream of getting married and having children. In that dream everything always turns out perfect…you have the number of children that you want, if you want 3 girls and a boy, that is exactly what you have. But as you grow up you learn that you still have a perfect dream, however, sometimes the circumstances in which you reach that dream level is a little different from what you imagined.
When Darrick and I talked about children we often talked about 3 kids. He wanted two boys and a girl, I on the other hand said if we have a boy and a girl I would be okay. We got the girl on the first try, and a couple of years later we were blessed with identical twin boys. However, one was born with complications and only lived for a little shy of 2 months.
Click to keep reading on The Green Eyed Lady Blog.
Here at The Rockin’ Boys Club, we think there are many ways our kids can make a difference in our communities, states, countries and even the WORLD! We want to recognize some of these amazing boys who are doing just that. In our “Boys Who Rock the World” series, we feature boys who devote their time to service, or who inspire people by leaving their mark on their communities.
This is 6 year old Maddox. He was diagnosed with Neurofibromatosis (NF) at the age of 4. You may not have heard of NF, but it’s more common than you might think. NF affects one in 3,000 people around the world, and there is no effective treatment or cure.
Maddox is in my son’s kindergarten class, and they became fast friends.
Click to keep reading on The Rockin Boys Club.
As a Mom, and as a volunteer who has worked with the bravest of cancer survivors and other people in need, my heart truly goes out to families wading the difficult waters of chronic illness. I feel like I can hardly imagine, yet I can imagine all too well the depths of suffering the whole family endures when a precious child is sick and you would give anything for them to be well again.
The unique trials of my own life have taught me to live with intention and purpose, never taking for granted the health that my family and I have been blessed with. My eyes have been opened to recognize just how fortunate we are when I look around at all the families dealing with long term struggles like chronic illness.
I know you feel the same, as the community here is one of the most caring and compassionate I’ve ever seen, and that’s why I’d like to share with you about a group of brave little fighters who often go unrecognized and even unheard of – children with Neurofibromatosis.
Click to keep reading on She Lives Free.
Did you know that May is May is Neurofibromatosis (NF) Awareness Month? It’s the perfect month to join the wonderful people at the Children’s Tumor Foundation and raise awareness about ending Neurofibromatosis Encompasses (NF) through research.
I’m excited to be part of this campaign because NF isn’t something we hear much about. Honestly, this is the first campaign that’s geared toward raising awareness for NF that I’ve had the honor of participating in. I do not have Neurofibromatosis (NF) but do know someone who has a child and husband fighting. Neurofibromatosis (NF) is something I rarely if ever hear people talk about and when it is mentioned many don’t know what it is. So I’m honored to be part of such a meaningful campaign, to be helping raise awareness and support all the NF fighters out there.
Click to keep reading on Jenn’s Blah Blah Blog.
I remember walking through the door. It was around midnight and I had just traveled home from California. Exhaustion was settling in as I set down my suitcase in the hallway. Then I stopped in my tracks.
The look on his face. Something was wrong. Seriously wrong.
My first thought…..my Grandma has passed away. I had just said what I knew to be my last goodbye with her just days before. I was wrong.
Tears started to flow. Our niece had a brain tumor.
Trying to explain to my 7-year old daughter that her older cousin had a brain tumor proved to be challenging, but we decided something needed to be said. Tragedy isn’t new to our family, but having my daughter live through it is.
Click to keep reading on A Frugal Friend.
