Brain Tumor Survivor Runs Second Half Marathon

This post is adapted from the author’s original post on her blog, NF2 Odyssey. The author, a brain and spinal tumor survivor, shares her excitement about happily “earning bling” at the Seattle Rock ‘n’ Roll Half Marathon in June after brain surgery seven months earlier.

By: Rebecca Dufek

Pleasantly the Seattle Rock ‘n’ Roll Half Marathon on June 26th went very well for me despite the difficulties I had during training with severe anemia, which resulted in mental and physical fatigue and hamstring tendonitis. Honestly after the first month of training, I had concerns about whether I was going to need to walk or walk/run this one.

I questioned if it was just too soon post a major brain surgery to take on this demand on my body (four brain tumors operated on only seven months prior to the event). However, if I was going to do it, I was committed to following through and honoring my word of running and raising money for the NF community.

This year being my second half marathon run was pretty exciting as I not only was part of a team, but my husband and sister were also running the half marathon with me. There is nothing like teammates to motivate you, especially for something as grueling as a marathon. The night before, Harley and I had a great time at the pasta dinner with the Seattle NF Endurance Team, which had people from various parts of the country. We learned stories of other NF patients. We  learned more about the meaning behind running or walking for this cause. I finally got to meet the infamous Steve Kendra who is director of the NF Endurance Team and traveled out from Pennsylvania for this event. I have been cooresponding with Steve for years.

Every year when I engage in an endurance event for a cause, I am greatly moved by meeting truly altruistic people who choose to take on this kind of challenge and raise money for a cause out of the goodness of their hearts and have no connection to NF or any other cause. These kind of people are truly amazing heroes to me!

The morning of the marathon my sister and I lost track of my husband Harley. There were thousands of people!!!! I heard there were at least 27,000….the largest event I have been in by far. My sister Michelle and I started out together in the same corale, which was rather special. Therefore, I had to do quite a bit more weaving in and out of people as well as passing.

I had no idea what my finish time would be this year because I had such a hard time training. Thus, I did not have a good estimate for my starting corale, but I really enjoyed starting out with my sister. I knew for certain that I finished just under my finish time from the year prior. Amazingly, however, I finished in just over 2:05, nine minutes faster than last year!! So I definitely earned the huge bling they draped around my neck when I crossed the finish. But even more than my physical effort to earn the medal, I fulfilled a promise to raise research money for the NF community. That is the part that is important: Running for a Reason. Thank you to all of our supporters and my parents who came up to join us in celebrating/cheering us on! We love and appreciate you greatly! Thanks for helping us to earn that “bling.” If you are just learning of my event now or did not get a chance to donate, there is still time if you would like to contribute to NF research. Just visit the following link to make a secure donation online. http://www.active.com/donate/nfseattle2010/RDufek1

Rebecca Dufek is an endurance athlete has battled brain and spinal tumors because of her NF2. You can read more about her journey on her blog, NF2 Odyssey.

10 Things to be Aware of on NF Awareness Day

May is NF Awareness Month, and in a particular effort to help get the word out, we have designated Thursday, May 20 as NF Awareness Day.  Please share this article with friends and family to help us get the word out and end NF!

10. Neurofibromatosis (NF) affects more than 1 in every 3,000 children born each day (more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined) (learn more).

9. It only takes eight to 10 letters from you and your friends to your state representatives for them to begin noticing that NF is a REAL issue. (learn more).

8. NF research is shedding new light on cancer, brain tumors, learning disabilities, and bone abnormalities – ultimately benefiting the broader community and those with NF. (learn more)

7. On May 8, 2010, in Greensboro N.C., there were more than 1,700,000 steps taken to find a cure for NF at the first North Carolina NF Walk (learn more).

6.  The NF Clinic Network now has 42 recognized centers throughout the country (learn more).

5.  This year, Racing4Research completed 611 Laps in the Rolex 24 Hours at Daytona International Speedway raising spirits, funds and awareness for our NF Heroes! (learn more)

4. To date, the Foundation’s investment of $700,000 in the Drug Discovery Initiative has returned $3.7 million in follow-on funding. Every dollar counts. (learn more)

3. In 2009 more than 1,500 Runners in neon NF Singlets crossed finish lines in 50 races nationwide for the NF Endurance Team.(learn more)

2. There are three forms of neurofibromatosis: NF1, NF2, and schwannomatosis. Each can cause tumors to grow on nerve endings in or on the body. (learn more)

And the No. 1 thing to be Aware of on NF Awareness Day: Every day NF research is moving closer to treatments and a cure for the many manifestations of NF. Your continued support of this critical research is improving the lives of millions of people as we work to end NF.

Poodle Love

Natalie, Mandy and Electra "Poodle" at reception for the Award of Canine Excellence from the American Kennel Club.

Natalie Willis was active in showing golden retrievers until her daughter Mandy began chemotherapy in February 2008. Mandy, has battled brain tumors, called optic gliomas, as a result of NF1. In Natalie’s work travels, she met Jane Alston Myers, whose father, George Alston, literally wrote the book on showing dogs. (“The Winning Edge” is available on Amazon).

Jane and her husband, Greg, run a kennel called River’s Edge Pet Resort. Natalie worked at the kennel for a time before Mandy started treatment. Mandy occasionally accompanied Natalie to work on weekends. Jane noticed that Mandy developed a strong bond with Jane’s beloved standard poodle, Electra.

Things were pretty rough for Mandy at the beginning of treatment. She wasn’t eating well, and she wasn’t sleeping through the night. She was scared, she was angry, and she wasn’t feeling well. When Jane heard of this, she had an idea. She gave Electra to Mandy.

From the day Electra arrived at our house, Mandy’s attitude and condition turned. Mandy began sleeping through the night, in her bed, with Electra by her side. Mandy began eating again. When Mandy wanted to play, Electra was ready to play, and when Mandy needed to rest, Poodle calmly lay with her.

Word of their special bond made it back to the American Kennel Club, and Electra won the AKC Award of Canine Excellence. Mandy and Natalie accompanied Electra to the presentation at the AKC/Eukanuba National Championship in Long Beach, Calif. It was Mandy’s first time in California, and she handled the travel and the attention beautifully, especially considering she was six weeks removed from chemo. You can read more about the ACE award winners here.

To celebrate, the Willis family is having a gathering at 7 p.m. on Feb. 6, 2010 at the Home Theater Gallery (3300 S. Dale Mabry Hwy.) to watch Animal Planet’s broadcast of the AKC/Eukanuba show, including the ACE presentation, and to say “thank you” to all the area businesses, organizations and individuals who provided us moral, emotional and financial support during Mandy’s treatment.

Natalie chronicled Mandy’s journey extensively at www.believeinmandy.blogspot.com.