Jamie Gurschick felt she needed to do something about NF besides waiting and wondering how NF would affect her newly diagnosed young son. So, she established SouthBound Beadworks to help create awareness of NF and raise funds to help Neurofibromatosis Northeast in their efforts to cure NF.
Jamie wrote the following:
I was introduced to Neurofibromatosis about two years ago, when my son Damian was just a few months old. At that time he started developing cafe-au-lait spots all over his body and we began seeing a specialist to monitor symptoms. Since then, he has been diagnosed with NF1 and has some other minor symptoms, but it otherwise a heathy, happy and mischievous little toddler.
As many parents of children with NF can confirm, the waiting, watching, and wondering what’s next, can be one of the biggest challenges. Over the last couple of years I have spent so much time thinking, what can I do right now? How can I make a difference for my son and others who share his diagnosis?
Living in rural Maine has made it difficult to connect with other NF families and fundraising events, especially when most people in my community have never heard of NF. This is what prompted me to combine my hobby of bracelet making with a goal of raising awareness and money for NF. And by doing it thorough Etsy and Facebook, I am able to reach my community and beyond. I created an NF Awareness Bracelet, with $20 from each purchase going to NF Northeast. The support and interest has been amazing! People in my community are asking questions about NF and wanting to learn more. So many people have expressed an interest in supporting NF research by purchasing a bracelet, but some are not directly impacted by the disease, so I have also begun donating 10% of all bracelet proceeds to NF Northeast.
Over the past few months since starting my online bracelet business, I have been so inspired by the support! My daughter, Madelyn and I love to think about all the people out there wearing their NF Awareness bracelets and the others they might touch along the way. It has been very exciting for my whole family! And while, any NF parent will tell you, the worry is always there, it finally feels like I am doing something other than just waiting, watching, and wondering what’s next!
NF Northeast thanks Jamie who to date has donated over $500 from the sale of her bracelets.
Take a look at her bracelets. They are beautiful!