NF Symposium by Kimberly Burton

On October 13, 2012, NF Midwest held its 21st annual symposium in Chicago. I was blessed enough to be in attendance with many NF families to hear three wonderful presenters, Dr. James Tonsgard, Dr. David Viskochil, and Dr. Tiffany Dell’aquila.  Each professional held true to his or her topic of the day and gave us hope that change in the field is about to happen.

Dr. Tonsgard started the day off with his talk on the Natural History of NF1.  In his presentation, he discussed his work on the NF database and how it has helped him see differences in complications in the disorder. In addition, he also discussed his treatment of NF patients and how he would like to see more aggressive treatments that he believes is based on chemotherapy.  He also discussed briefly genetics, which was a natural transition into the topic of Dr. Viskochil. 

Dr. Viskochil’s morning presentation was on genetic testing in NF1 and his afternoon presentation was on NF1 and bone health.  Both presentations were very interesting.  The morning presentation was very heavy-handed on genetics, but he was very successful in presenting the material in a manner that everyone could understand.  He explained how the NF mutation occurs and what happens, when it happens. By using cartoon illustrations, he made this complicated process easy to understand.  In both presentations, he made it very clear that NF is a spectrum disorder, meaning that one person’s symptoms will be different than the next.  However, like most disorders, there are commonalities that occur among most people diagnosed with NF. 

In the afternoon presentation he discussed leg bone bowing and the research occurring to help correct the false joints that can happen if and when the bone breaks.  He also touched on scoliosis and how it affects most people diagnosed with NF.  Dr. Viskochil briefly discussed learning disabilities in children with NF.  He stated that about 51% of children with NF have school problems, but only 34% receive special education services.  He did not explain in more detail the reasons behind this, but it proved to be a natural transition into the next presenter.

Dr. Dell’aquila is a clinical psychologist who specializes in executive functioning.  Her presentation emphasized on an individual’s ability to manage daily routines and setting goals.  It was very informative for anyone who may have executive functioning problems.  She gave many signs to look for and easy ways to work on correcting them.  Overall, she was very inspirational and gave very good tips as to how to keep on track and accomplish the goals you have in sight. 

This was a great event put on by NF Midwest, it was very informative and gave a lot of hope for the research being done and that will be done in the future.  I think in time we will see the world of NF being changed for the better, as researchers discover new modifiers and factors that affect NF.  It is something to be on the look out for in the months and years to come.  

Running in the Heat

Running in the Heat

By: Kimberly Klessig, Littlest Tumor Foundation Master's Intern

This past winter, I started as a master’s intern for the Littlest Tumor Foundation. Prior to that, I had been an avid runner and participated in a few 5ks. Running was something that I found as a way to reduce stress and keep a healthy lifestyle. I had been running with a friend on a regular basis, so when my supervisor asked me if I wanted to run in the Green Bay half Marathon, I was both excited and nervous! I decided to go for it! We live once, right?

Commitment is key! I found that finding the time to train, while attending school for my master's degree, while working, and balancing everything else was surely a time commitment! I found that designating time and sticking to that time worked well for me. It also helped to have a workout partner to help motivate and push me to the limits.

A few days before the race, they sent out a weather advisory to prepare runners for the predicted heat extreme on the day of the race. I felt extremely confident on the day of the race that I had been training months for. I made sure to get a lot of rest, eat right and hydrate beforehand.

 On race day, as I was getting ready the morning of and while driving to Green Bay, I had an extreme feeling of exuberance and excitement. That feeling continued as I began the race and all the way through it! The screaming and yelling of the fans along the sidelines, the smiles and excitement of the other runners, and the whole experience brought an adrenaline rush to my entire body, mind and soul. 

Due to the heat, they had houses put out water sprinklers as we ran by. I made sure to run through every single one! As I ran, I concentrated on my breathing and listened to my body when I needed to slow down or stop and drink some water. Each time I passed a mile marker, my friend and I did a fun leap and high five to each other. This was a fun trademark we began during the race.

  I began to get really hot and started feeling tired at about mile 10. My legs started hurting a bit, but really I felt like I could have run forever. As sweat dripped down my face, I stopped and paused a second and took in the moment and feelings I was having. I thought to myself: I am at mile 10, I am almost there, and you can do it! I thought about all the people that can’t run or wish they could run…I thought about Sami and children affected by childhood cancers and other health concerns…THIS little pep talk gave me the encouragement to complete the race!

At 9:35 a.m., due to the extreme heat, the Cellcom Green Bay Marathon’s medical director made the decision to shut down the course for safety reasons for the runners.  I fortunately, was able to cross the finish line! I remember, as I ran across that finish line, the feeling of accomplishment. All the training had paid off and that feeling no one could take away!  It gave me a sense of being, of accomplishment and of true gratification! I encourage all runners to sign up for a race, even if you’re not a runner…try it out, start small…you might surprise yourself!