Friday, October 26, 2012

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.  

Tuesday, October 16, 2012

Delicious Ideas from Weelicious!

Not sure what to feed the family tonight? We've all been there. So let's look at a few words of advice from Weelicious founder, Catherine McCord. She has been cooking healthy and nutritious meal options for her children. Her website also features ideas lunch ideas for kids during the school year.

Q1: Your website Weelicious, has become a go-to for easy, fast, nutritious meals and recipes for may families. What inspired you to get started on this cooking path?

A: I wanted to inspire my kids to be great eaters. I have always been fascinated how some children love good food--- why some are great eaters and some are picky. The idea of how much impact do you as a parent have on your children’s eating.

Q2: What do you love about cooking?

A: Beginning, middle and end. I love finding the produce at farmer’s markets that have fresh seasonal produce. I love cooking it and finally feeding my family.

Q3: What is the most popular dish people love from your website?

A: Oh so many-- Raspberry Cream Cheese Tart, Kale Chips, Cinnamon Roasted Chick Peas, Crock-pot Mexican Lasagna.

Click here to get inspired! 

 

Thursday, October 11, 2012

A Culinary Connection- A Chef's Advice on Kids Eating Healthy

In keeping with the theme of eating healthy, eating together, let's look at an interview with the chef for our annual family Wellness Retreat, Linda Ott.
Linda cooks nutritious meals for us and naturally, she enjoys cooking as a hobby when not helping others make good dietary choices. Let's look at what she had to say in our December 2011 interview with Linda on how to involve your children and family into cooking.



 Here is an excerpt:

Q) How can parents get their children to integrate healthy food into their diets?

A) Healthy eating should start at birth. The more you expose them to healthy foods, the more likely they will choose to eat healthy. Remember, kids are watching what you eat as well--set the right example. There is a lot of comfort food, it’s truly a mindset of choosing and I think that if you talk to anyone in the healthcare industry there are things a person can do. I think that people aren’t going to change the way they eat, until they are ready to change their eating habits.

Q) What has worked for you to get your children to eat healthy?

A) I raised them the same. My first child was raised on a vegetarian diet until about three when she came to Wisconsin. My 15-year-old has always been an easy-to-please kind of eater. She will try anything and enjoys healthy food--not to say that she doesn't enjoy junk food but if I stock my kitchen with good food, she will choose to eat good food.
My 6-year-old, on the other hand, is my picky eater. As with most kids, her tastes are constantly changing--one week she loves carrots and the next week she won't touch them! We grow a lot of our own veggies in the summer and that seems to help to get her to try the veggies after she has worked so hard to grow them. She also loves to cook with me and here again, if she is involved, she will try it. She has her days, some days I make Mac’ n Cheese but she also eats broccoli. I sometimes have to pick my battles. During the summer she is more likely to eat vegetables because she could see how they grow. I also find that she is more willing to try new things if they are simple--not a lot of sauces or seasoning and she prefers to eat one food at a time so no casseroles for her. I find that when I cook with my daughter she is more willing to try it later.

Q) In closing, what are some tips or even advice to give to people who are trying to eat and cook healthier?

A) The web has made searching for recipes so much easier than scouting through countless cookbooks. From what I have read I have learned that fresh is best, but frozen is the best second choice. When I do my own freezing I do them in servings of four and when it’s for a family or yourself then fresh is the best idea to go.
Take baby steps; don't try to overhaul your diet overnight. Start by adding a new fruit or vegetable each week or every other day. Try practicing Meatless Monday. Whip up a new flavored smoothie each week.

Click here to read the rest of the article.

Tuesday, October 9, 2012

Back to School and NF Kids




With the new school year well underway, many kids are excited to go back. At the same time, some NF kids may face some social and behavioral issues. Let's revisit our interview with the University of Wisconsin-Milwaukee Psychology Department's Kelly Janke, M.S., to learn more about learning issues and NF children.


1. Discuss some of the learning issues that you have seen with NF children in school.
Children with NF-1 are more likely to have learning difficulties than their siblings or same-age classmates who do not have NF-1. The rates of learning disabilities range from 30%-65%. Difficulties have been seen in all academic areas including word decoding (sounding out words), reading comprehension, math calculation, math problem solving, and spelling. We really see a lot of variability in the learning profiles of children with NF1.
2. I understand you’re doing a study on NF kids and their siblings, could you discuss that a bit further?
For our study, we recruit children with NF-1 and their siblings between the ages of three and six, and plan to follow them annually up until the age of 10 if possible. The goal of the study is to examine the cognitive and behavioral characteristics of NF-1 in young children to determine if we can see early signs of learning and attention problems. We are also hoping to learn more about the development of cognitive skills over time, and determine if this development differs from their siblings or other typically developing children.
3. What are some of the preliminary results you are finding?
We have found that learning and attention problems can in fact be identified in the preschool age range. There is no clear pattern to these difficulties. For example, some children have difficulty with verbal tasks (e.g., naming pictures, following directions), but do well on spatial tasks such as building with blocks. For other children, the opposite pattern is seen. Regardless of the pattern, most children with NF-1 have some difficulty in at least one area, although it may be mild. It is important that these difficulties can be identified at this young age because that allows interventions to be put in place earlier and prevents more pronounced learning and attention problems. 



Tuesday, October 2, 2012

Eating better, eating together


Eating together is an important part of relationship building in a family. It bridges gaps between generations through stories, cooking and recipes. Not too long ago, many families ate a nutritious, home-cooked meal together. Sometimes the food was homegrown- straight from the family garden. However times have changed.
Now people are on the go or on social media and have little time to eat with one another. Our jobs and academic obligations now have us eating at fast-food establishments by ourselves with no one to talk to. Nowadays, a family may eat together during national or religious holidays at most. The precious moments of spending time dining together are irreplaceable. At Littlest Tumor Foundation, we dedicate this month to eating better with those whom we call family and friends. So take the time to eat better and  eat together as a family this month.