Orono Woman Turns Daughter's Diagnosis into Search for a Cure

The Dunlap/Pastel family of Orono, along with members of the local community and families from across the region, will come together this Sunday, July 29, at Minnehaha Falls Park in Minneapolis to raise awareness and funds for neurofibromatosis (NF). All proceeds from the Minneapolis NF Walk will support the Children’s Tumor Foundation’s medical research, patient support and public education programs.

Joanne Pastel organized  the walk because her daughter, Jacqueline, was diagnosed with NF1 approximately three years ago at four months of age. The family noticed some faint brown spots on Jacqueline’s skin and inquired about them during a routine pediatrician checkup.  

Pastel left that appointment with a diagnosis she could hardly pronounce: neurofibromatosis.

“The initial diagnosis was a shock, but after learning more, our family has gotten over being upset," said Pastel. "Now our energy is focused on fighting for a cure and educating others about NF."

Jacqueline is not experiencing any of the debilitating outcomes of NF now, but there’s no cure and no guarantee that it won’t get worse as she gets older.  

"In addition to ensuring the best care for Jacqueline, I want to help others living with the uncertainty of NF," her mom said. "I encourage everyone to join us for the 2012 Minneapolis, Minnesota NF Walk. Help us make a difference in the fight against neurofibromatosis.”

NF is a progressive disorder that causes tumors to grow on nerves throughout the body. It affects millions of people worldwide and is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.  

The disorder can lead to deafness, blindness, bone abnormalities, learning disabilities and cancer. However, NF research is shedding new light on those and other complications as the Foundation searches for effective treatments for neurofibromatosis.

“Parents of kids living with NF, like the Dunlap/Pastel family, have proven time and again that they will go to the ends of the earth and do anything to find treatments for their child," said Traceann Adams, Director of the NF Walk Program at the Children’s Tumor Foundation. "If their passion alone could fund NF research, this debilitating disorder would have ceased to exist years ago. Events like the Minneapolis NF Walk serve as great opportunities to increase awareness about neurofibromatosis and raise funds to find treatments for those affected.”

In 2011, Pastel organized the first Minneapolis, MN NF Walk which was a resounding success with more than 300 participants and over $30,000 raised for Children’s Tumor Foundation research.  

The 2012 NF Walk takes place from 8 a.m. to noon, and you can find more information and register to participate at www.nfwalk.org/minneapolis.

For more information on the NF Walk Program, please visit: www.nfwalk.org.

If you go:

What: 2nd annual Minneapolis, MN NF Walk to benefit the Children's Tumor Foundation Participants will walk the 2 mile route, followed by a silent auction/raffle, food, and lots of fun – including entertainment by the Radio Disney road crew and “Games to You” mobile video game van!

Who: Individuals, friends, and families who want to make a difference for those living with NF.  On-leash dogs are welcome too!

Where: Minnehaha Falls

Waburn Picnic (D) Area

4655 46th Ave. S.

Minneapolis, MN  55406

When: Sunday, July 29, 2012

8:00 a.m. – Registration

8:45 a.m. – Opening ceremony

9:00 a.m. – Walk begins

Why: To raise funds for the Children's Tumor Foundation.  The Foundation's mission is to end neurofibromatosis (NF) through research.  NF is a common, yet under-recognized, genetic disorder that causes tumors to grow on nerves throughout the body. The disorder can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.  NF affects one in every 3,000 people, making it more common than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined.