Help Nyla fight CIDP

Urgent update: 

Nyla is now fighting to keep her medicines coming in a broken medical system! She has been without medication for over a month now, and can feel her disease progressing. The copay assistance program she was utilizing has run out of money to help, and the specialty pharmacy will not send her any more medication because she has an $11,650 bill.  This is after insurance has covered their portion. Nyla's meds cost $10,000 a month, and there are not more affordable options for this rare disease.  This is clearly going to be an ongoing battle for Nyla the rest of her life, and every little bit helps!

Hi, my name is Kristen. But our fundraiser isn't about me. It's about an incredible, adventurous, water conservationist, wife, mother, and friend to the community - Nyla Pipes.

We all know time is money... but in Nyla's case money is time. She is currently doing at-home treatments once a week and hoping this will slow the degeneration caused by this disease. The disease is Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. While we are working with what her insurance currently offers, and hoping for the best, we know as science and research advance so do her treatment options. And this particular disease is incurable, but treatable.

My family is very close to Nyla and her family. We used to watch Nyla truck through the muck, hunt gators, explore the Everglades, run down the beach, hang fearlessly off the back of a power boat tube and fight pythons. :) We couldn't sit back and watch from the sidelines and hope her treatments at home would completely heal her. So we had to try in a bigger way - by asking her people for help. Even if we don't know the next step yet, we need to stay ahead of it and help Nyla feel as "normal" and comfortable as we can.

Nyla has raised money for countless non-profits - helped and volunteered endlessly for everyone and anyone who asked. And now, she's not asking, but I am. Please help us raise money to give Nyla more time for her body to fight this rare and debilitating disease. Any amount will help her get to the next treatment, provide medical equipment to ease her mobility issues and keep her comfortable while she fights.

Money should never be the reason someone can't fight longer and harder for their life. Together Don and Nyla can conquer difficult things, but they shouldn't have to do it alone. We all know the world is truly better with Nyla in it.