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Sweet Tea for Sophie

May 26, 2017, Posted in Community, Fundraiser, NF1

Our four-year-old daughter, Sophie, is full of personality; so much sass in such a tiny little girl! She's strong and independent, always insisting that she do things "all by myself." She loves to dance and play with her big brothers. And when she grows up she wants to be a ballerina dinosaur. She's silly and giggly and fierce. 

A week after Sophie was diagnosed with NF1 we found ourselves running down Folly Beach in our underwear. The next event in our community listed on the CTF calendar after we got her results was Cupids Undie Run. So there we were, still not even really understanding what NF was or what it meant, but we had to do something!

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Stories of NF: Austin R.

May 24, 2017, Posted in NF Hero, NF1

Austin was diagnosed with neurofibromatosis type 1 around 6 months old. He had cafe au lait spots and swelling on the right side of his face. Even though I have NF, we were told there was a less than 5 percent chance it would get passed down. He was getting an MRI and, by chance, the anesthesia department was having issues getting the breathing tube down. They called the doctor in charge in the oncology department, who, also by chance, was an NF specialist. That was how he was diagnosed.

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An NF Mom Reflects on a Her Son’s Path to Progress

May 22, 2017, Posted in NF Hero, NF1

By Kelly Carpenter

As the youngest of 3 boys, Travis’ biggest concerns should have been keeping up with his brothers and what games they could play. As parents, our biggest concern should have been that we were outnumbered...3 kids to 2 parents. However, life brought a different set of challenges. Travis' first café au lait spots appeared shortly before 4 months of age and the NF1 diagnosis by our pediatrician followed at 6 months. To see his medical issues on paper, you would never guess how well he functions in the world. His spirit remains positive throughout all the challenges he faces due to NF.

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Stories of NF: Brayden K.

May 9, 2017, Posted in NF Hero, NF1

Brayden was diagnosed at only a couple months old. When they diagnosed him, my husband and mother-in-law finally had a diagnosis also!

Brayden has a large clump of fibromas on his neck and shoulder region. The hardest thing ever is hugging your child and they scream in pain and there is nothing that you can do to help him.

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A Mother’s Love: Liz and Sarah Rodbell

Apr 27, 2017, Posted in NF Hero, NF1

In honor of Mother’s Day this year, we asked Liz Rodbell to tell us about her daughter, Sarah, who is the 2017 NF Ambassador.

“When I first found out Sarah had NF, I had no idea what it would mean for her, for our family and for me as her mom."

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