Dear Family and Friends,

We are going to be running the New York City Half Marathon! Laura is also the Team Captain for the NF Endurance Team for this race in March 2011. We are running on Team Julia Ladybug. We are running together to find a cure for Neurofibromatosis or NF1. NF has no treatments and no cure.

This is why we run. Our family fights a daily battle against Neurofibromatosis or NF1. Our daughter Julia "Ladybug" is turning 8 in August. NF means that tumors grow throughout the body and can lead to learning disabilities, blindness, deafness, broken bones and cancer. NF means every cell in your body is running to fast, dividing and causing tumors to grow. NF affects 1 in every 3000 births and can happen to anyone.

Anyone's next baby can be born with NF. There are no treatments and no cure for NF. It is one of the most prevalent genetic disorder. It strikes people of all races and ethnic origins worldwide and both sexes equally. Our family has no history of NF. Julia has NF due to a spontaneous mutation. Julia is only 7 years old and she has had more MRI's than most adults. Julia has several areas in her brain that are suspicious. They are in her brain stem. These areas act like tumors in some ways, they have mass. Julia has an MRI every 6 months to check those areas. Julia is put under general anesthesia for up to 2 hours during an MRI. She is sick for hours after. Julia has migraine headaches and insatiable itchy skin due to NF. Julia has had trouble this year realizing that NF will be a part of her for the rest of her life. Julia has had to be a brave, strong girl and she will need to stay this way to fight and win the battles that lie ahead. NF is progressive. We know that as a person with NF grows the challenges they face increase with age and time. We don't know the rate of that progression.

Our Team Julia Ladybug is raising money to fund the research desperately needed to find a cure or at least treatments. There are too many questions surrounding NF and so much is at stake. We are determined to change the face of NF before it has a chance to affect Julia. The possibilities NF has in store for Julia no one can predict. How it will manifest itself through her life keeps her parents awake at night. As a parent it is very difficult to hear that your child has any special needs, no matter what they may be. Living every day, remain positive and taking care of a child whose medical needs are so complicated is an exhausting, emotional roller coaster. Children should be free to grow, play and live happy, healthy lives. Parents should be able to love them, watch them grow and have the luxury of small worries. We are doing everything in our power to keep it that way. Thank you for anything you can do to help our daughter and so many people affected by NF. We appreciate it.

And to learn more about the Mighty NF Endurance Team and where we are funding research please read "Team Fundraising Dollars at Work" CLICK HERE.

You can help! You can make a donation or cheer us on. Your donation to The Children's Tumor Foundation is tax deductible. Our fundraising goal for Team Julia Ladybug is $50,000. Together we can make a difference!

Thank you,

Laura and Anthony Perfetti

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