Weekend Pacesetter (July 23-25, 2010)

SAN FRAN
From the early morning smells of sourdough bread baking…to the sun setting over the bay, it’s no wonder why Tony Bennett sang that it’s easy to leave your heart in San Francisco. On Sunday NFE runners, led by co-captains Josh Thieriot and Cathie Leys, will put their hearts on the course for NF Heroes in the San Francisco Marathon. Steve Kendra will be staffing the event. The San Francisco Marathon is unique because it offers two half marathons, one marathon, a progressive marathon and a 5K. The NFE San Fran Team has raised more than $17,500. You can help them meet their goal by donating here. 

RESEARCH
Check out Dr. Kim Hunter-Schaedle’s thoughts on Avastin and Breast Cancer on the Foundation’s blog this week. In the news this week, a Food and Drug Administration advisory recommended that the drug Avastin (bevacizumab), the best selling product of Roche, have its 2008 approval for advanced breast cancer treatment revoked. (Read more).

BUTTAR BUDDIES
Tracy Draper has helped NFE partner with Buttar.com, a race organization for events such as triathlons. Tracy recently competed in the Moss Park Tri in Orlando, Fla., and placed fourth in her age group. She is pictured here with her daughter, Suzie.

Active Fundraising Page of the Week
Monica Hattoon-Green
Why we like it: Monica’s clean design allows the viewer to clearly get the message: little Maria,  a family friend, has NF and could really use a cure. She succinctly describes what NF is and what can happen when symptoms manifest. She also directs viewers to learn more about research advancements by using “Team Fundraising Dollars at Work.”

Weekend Pacesetter (July 2-4, 2010)

CELEBRATE
Check out some of Active.com’s Fourth of July ideas to make the holiday weekend full of fit fun.
- Eat Healthy at Your Summer Barbecue
- Fourth of July Races – The Fourth of July happens to also be a popular race day for many runners. More than 55,000 runners will fill the streets of Atlanta at the AJC Peachtree Road Race. To find a race near you, click here.

FLASH
Check out photos from last weekend’s Rock ‘n’ Roll Marathon in Seattle. NFE raised more than $33,000 for NF research. They are also on flickr.com/NFEndurance.

SKIRT
Earlier this year, Skirt! magazine featured Candice Patterson. Check out this followup Q&A on Candice published this week; she continues to inspire us with her resilience and dedication.

CAMP
Did you know that CTF has a summer camp each year for kids who have NF? The camp, located in Emigration Canyon, Utah, offers activities such as swimming, horseback riding, campfires, climbing, fishing and camp outings. For more information, please contact Patrice Pancza ((Enable Javascript to see the email address)). Check out this video about what makes this camp memorable for campers.

Active Page of the Week
Team Noah
Why we like it: Even though the Tyrybon’s are fundraising for Disney 2011, they keep their page up-to-date with fundraising events. If you are in the Michigan area in July, be sure to check out their golf outing on July 24th and their fourth annual Concert for Noah on July 30th. Our favorite reason about their fundraising page? The picture of their little rockstar, Noah!

Save the Date: Upcoming July Events
- Sunday, July 11, 2010 – NF Picnic, Sellersville, Pa. (for more info, click here)
- Saturday, July 17  – Seattle to Portland Bicycle Classic (for more info, click here); NF Carnival, New York, N.Y., (read more)
- Sunday, July 18, 2010 -Green Bay Connected for a Cure NF Walk, Green Bay, Wis., (read more)
- Sunday, July 25, 2010 – San Francisco Marathon, San Francisco, Calif.,  (for more info, click here)
- Friday, July 30, 2010 – Concert for Noah, Wynadotte, Mich., (for more info, click here)
- Saturday, July 31, 2010 – Bowling4Bumps, Brooklawn, N.J. (for more info visit Bowling4Bumps on Facebook); Izzy’s Backyard Carnival, Paw Paw, Mich., (read more)

Camp K Crafts Confidence for Campers

NF Camp has become a part of Katie Oslica’s summer traditions. “Camp means so much to me,” said Katie Oslica, of Bigelow, Ark. “It has shown me that I’m not alone in this journey and has helped me make many new friends who are going through the same thing as me.”

Camp Kostopoulos, located in Emigration Canyon, Utah, just 35 minutes from Salt Lake City Airport, will host the NF Summer Camp for the 14^th year.  In 2010 there will be two sessions to choose from: Saturday, July 17 – Friday, July 23 and Saturday, July 24 – Friday, July 30. Each session generally has about 35 campers said Patrice Pancza, the Foundation’s Camp coordinator.

Camp activities include swimming, horseback riding, campfires, a rope course, climbing wall, canoeing and fishing.   The offsite activities, including a day at the water park, movie night, and other fun outings, are some of Katie’s favorite things to do.

Katie’s mom Lesley wasn’t completely comfortable the first time Katie flew by herself, especially since Katie had a connecting flight. However, after Katie returned home the first time from camp, the smile on Katie’s  face and the excitement in her voice allayed any concerns. The first thing Katie said when she saw mom and dad? “We have to plan this for next year! This was the best week of my life.”

Since that first week of camp, Katie has become more self confident and less concerned about NF. “She talked about how great it was to be with other kids ‘like her,’” said Lesley. “She said it was like having a bunch of brothers and sisters around because they all know what it’s like to have NF; no one was bothered by bumps, café au laits, or any other side effects of having NF. So, they all just got to have fun for the whole week and not worry about NF.”

Some parents might be apprehensive to let their child get on a plane to attend camp for a week and that’s okay said Lesley. “We are their parents and that’s a natural response to our children being away for a week; however, I would also encourage parents to allow the child to that first time and let the child describe their experience.”

Counselors are carefully screened before being brought on as staff. “Once an applicant has been received, an interview is conducted and references checked to ensure the best possible staff for the Kostopulos Dream Foundation are being hired,” said Mircea Divricean, of the Kostopulos Dream Foundation. The counselors also attend a ten day training session where they receive first aid and CPR certification, SOAR training, food handler’s certification, OSHA certification, emergency procedures training, and behavioral issues training.

Through the generous support of our donors, scholarships are available to any child with NF needing financial aid in order to attend.  We offer full tuition scholarships, and in cases of particular hardship, we can provide travel assistance as well.  Attendance is limited, but if space is available, no child will be denied participation for financial reasons.

The camp experience helps participants become independent and furthers their ability to interact socially with others who have similar life experiences. “NF Camp has been one of the greatest blessings after the hardship of learning about NF for the first time,” said Lesley.  “A hidden treasure along the journey of life with NF!”