Neurofibromatosis intern

Hello all,
My name is Mardy Wiesman, a recent spring 2011 graduate from University of Wisconsin-Oshkosh. I had gone to college for a journalism degree with an emphasis in advertising and religious studies minor. I enjoy writing and my dream job someday will to be a copywriter. I have recently started at the Littlest Tumor Foundation (LTF) in late November 2011. Here, I am going to be in charge of the blog and contacting fellow bloggers on the net to join the LTF blog.
Prior to my internship here, I had no idea what neurofibromatosis (NF) was at the time. I sometimes would watch The Learning Channel (TLC) from time to time and there were a handful of specials on the disorder from time to time, although I forgot the disorder’s name over the course of time. After reading the book “Understanding Neurofibromatosis: 2nd Edition An Introduction for Patients and Parents” by James Tonsgard, Ph.D., for LTF, I was able to connect the disorder with the documentary specials I had watched years before. One of the points of both the book and the documentaries was the mentioning of café-au-lait or coffee mixed with milk-colored spots that were present on those who were afflicted with NF.
Then it came back to me. I remembered how some people would have these spots on their body and that would be all they would be afflicted with. Then I remembered how other people would get a more severe case of NF and have neurofibroma or tumors all over their bodies. Yet at the same time, NF is a common, yet relatively unheard of disorder. Here at LTF we are spreading the word on NF by means of social media such as blogging and Facebook, but also through events and campaigns. Together we can find a cure for children with NF before they reach adulthood. Join LTF today and soon we will find a treatment because, “Tumors in children, we do not like them!”

Neurofibromatosis and Green Juice

Posted on November 29, 2011 at 11:40pm

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I was moved this week when I read an article written by my friend's sister. I wanted to use my blog this week to share it with you for two main reasons.

First, I wanted to give some publicity to the rare condition of Neurofibromatosis as it is something that many of us know nothing about. Briefly, it affects 1 in 3,000 children and causes tumors to grow anywhere in the body including the brain and spine and can cause a series of other significant health issues. They range from serious skeletal abnormalities, to endocrine issues, to difficult-to-treat cancers. Much is not understood.

Tracy Wirtanen, the author of the article I read, and my friend's sister, is the mother of an 8-year-old boy, Sami, who is diagnosed with Neurofibromatosis. You can read her blog here, where she wrote as a guest on Kriss Carr's website crazysexylife.com and you can find out more information about Neurofibromatosis at the website of the foundation she created at www.littlesttumorfoundation.com

Secondly, in her article, Tracy talks about the changes she and her family have chosen to make with regard to their nutrition, both for Sami and the other members of her family. She talks about the fact that Sami drinks green juice every day, and loves it, he even asks for it! I bring this up, because it highlights something that can get forgotten when we talk about juicing. This stuff is really good for you, at a cellular level. There is a real theraputic benefit in drinking vegetable and fruit juice. Our bodies can use the nutrients provided by the juice to both prevent future tumour growth, and help the body deal heal itself.

Yes, juice is a great vehicle to boost health and vitality, and help us to clean our systems when we have overindulged, but there is a more serious side to its benefits as well. If incorporating it into your diet will allow your body to battle cancer tumours, or give your body the tools it needs to prevent them developing in the first place, then what an incredible gift you can give to yourself, and your children every day! The gift of good health!

For those of you with juicers, then try the following Green Juice recipe, packed full of antioxidants, chlorophyll and good health.

Green Delight

3 kale stalks

1/4 pineapple (not peeled)

1 apple

1/2 piece ginger (not peeled)

1 stick celery

1/2 lime (not peeled)

Pack the kale into the juicer chute, and put the apple on top, then whizz every thing through the juicer. If you want to add some extra nutrients, then add a spoonful of spirulina to the juice and blend it with some ice.

Please do click on the link to both Tracy's article and her foundations website, she is doing terrific work to educate us about this potentially devastating disease.

If nothing else, give Tracy, Sami and her family a thought or a prayer over the coming weeks, and if you are lucky enough, be thankful for you and your families good health.

Happy Juicing,

Jx

http://millburn.patch.com/blog_posts/neurofibromatosis-and-green-juice

Spork Foods Interview

Spork Foods: Jenny Engel and Heather Goldberg

Q1

You two have become famous as vegan sisters who teach how to make fun and

delicious vegan food. How did you get started on this cooking path, and why did

you start Spork Foods?

A:

Jenny: I became a vegan in college with the connections I made about the

environment and food choices. Initially, it really began out of immediate necessity,

as at that time there were not a lot of vegan food products out there and it

prompted me to begin cooking and loving it. We always really wanted a sister

business and so as we came to the same realizations about food on separate

paths, it ultimately led to Spork. We love empowering people to cook and

eat fun and easy foods and the best way we know how is through classes.

Heather: It began with a bit of empowering people to take their health into their

own hands and impact animal suffering.

Q2

What do you love about vegan cooking?

A:

Heather: A lot! It makes us feel good that we make three choices a day about

what we put in our body. It impacts the earth, animals, and our health.

Jenny: It is a fun challenge to make tasty food. I am able to be creative and make

healthier options.

Q3

What are the top three most popular dishes/recipes from your book or cooking

classes?

A:

1. Mac-n-Cheese: It was 4 years in the making. It is a go-to recipe that is a great

comfort food in fall and winter.

2. Crunchy Peanut Butter Bonbons: They make people happy.

3. Seitan Wellington: It is designed for the holidays made vegan style.

Q4

Because we focus on children, in your opinions, what are the must-have

ingredients for a healthy family vegan pantry?

A:

1. Nutritional yeast: Sprinkle on popcorn and salads for good flavor.

2. Miso makes soup fast, is immune boosting, fights infection, and there are

probiotics in it. It is a staple in our pantry.

3. Fruits and vegetables, of course!

4. Kids love quinoa with chopped veggies.

5. Tortillas are great to wrap around everything, especially butternut squash

enchiladas.

Q5

What effect has vegan eating had on your lifestyle? What are the health benefits

of being a vegan?

A:

Heather: I lost 20 pounds without trying or knowing it and have stayed at my

ideal weight. I had high cholesterol and it is now perfect.

Jenny: I have a lot of energy that comes from eating good food. It is really amazing

energy and I sleep so well at night. I also no longer feel guilt about foods I eat. It

changed our lives. We are able to live out our dream with a purpose. I feel very

lucky being able to do what we love.

Q6

What is your all-time favorite recipe you have created?

A:

Fettuccine Alfredo! We crave it on a weekly basis. It is creamy from cashews and

has a satisfying quality.

Q7

What does the future hold for Spork Foods?

A:

We are working on refining the Spork online classes. We want to get the word

out to the world. We have tons of content already with 19 classes. We want to

expand our website. We have many tricks up our sleeves.

A Journal of Cookery

THURSDAY, SEPTEMBER 22, 2011

Brussel Sprouts

My kids love brussel sprouts. It is the go-to vegetable in our house, when all else fails (nutrition-wise). So I am happy they are in season! I normally just cut them in half, brown them with a bit of butter and finished them with a bit of stock till softened in a skillet (s&p, of course). But I happened upon this recipe and liked the idea of beans and brussel sprouts together. Adapted from an old Bon Appetit magazine (brussel sprouts from Farmer's Daughter http://farmersdaughter.farmvisit.com/):

Brussel Sprouts with Cannellini Beans

3/4 cup dry cannellini beans (or 1 can of cannellini)

1 cup vegetable stock

2 lbs brussel sprouts

4 cloves of garlic, chopped

2 tbsp butter (plus an additional tbsp for finishing)

1/4 cup fresh grated parmesan

Salt and pepper

Soak beans overnight...drain, rinse and cover with cold water (about 2 inches higher than the beans). Bring to a boil, reduce to simmer 1 hour (add a couple cloves of garlic for flavor...salt when there is about 15 minutes left to go). (Skip this step, if using canned.) Melt 2 tbsp butter and toss w/brussel sprouts...roast in oven at 450 for 15 minutes. In a skillet, saute garlic in remaining butter and then add stock and brussel sprouts for 5 minutes...then beans, salt, and pepper. Place in serving dish and add cheese.

(Am going to use this opportunity to plug my favorite beans,

Rancho Gordo, www.ranchogordo.com)

*Sidenote...I ended up cutting the brussel sprouts in half at the end, and would recommend cutting them in half before roasting in the oven.

The Power of Family Fitness

The Power of Family Fitness

Often times, when we think about being active we think of it as something we have to “squeeze in” when our kids are sleeping, at a friend’s house, or at school. Have you ever thought about how great it would be to include your family in your pursuit to exercise more regularly? Exercising as a family will improve the health of your entire family, make exercise more fun, and at the same time help family members develop stronger connections.

Some simple tips to get you started.

You may start out by simply focusing on educating the entire family about the benefits of being active and leading a healthy lifestyle.

Put up a healthy living bulletin board in your kitchen, with resources about the benefits of leading a healthy lifestyle, this will help get your point across, without having to bombard your family with statistics and facts related to living healthy. Example: post a story about a young person who had trouble focusing at school but started exercising and saw an amazing difference. You are only limited by your creativity!

Here are a few other ideas to get your family focused on fitness:

• Have a family member pick an exercise at the beginning of the week and make that your family activity for the week. Then train throughout the week with the goal of improving by the weekend. Keep the focus on the fact that everyone is improving. Rotate who gets to pick the activity each week.




• Hold a family fitness night each week. Each week select a different family member to design the family workout that you will all do together. This ensures that everyone gets to do something they enjoy, and your workout will never become dull.




• Join a fitness facility. You will be surprised how motivated your entire family will become when you all head out for a workout after dinner each night or take a class together. You can also purchase small pieces of equipment to keep around the house (jump ropes, resistance bands, stability balls and dumbbells) to keep you from missing your workout on even the busiest of school nights.




• Never underestimate the power of going for a walk. It is a great mode of activity and also naturally encourages conversation.




• Set some family goals. Example: Set a target of being activity 3 nights per week, and build from there.

Most importantly, make the process fun. You’ll be teaching your children about discipline, goal setting, and the importance of not only health, but also family connection.

Interning for a Solution

Hello!

My name is Kayla Guns and I am the Littlest Tumor’s intern. Before this summer I had no idea what Neurofibromatosis was and defiantly didn’t know how to spell it. But it didn’t take long to learn that this disorder had huge impacts on families and the people who live with it, especially children. Our motto is “tumors in children, we do not like them,” which I think sums up LTF in a nutshell. The Littlest tumor Foundation is truly inspiring, the people involved work so hard to promote awareness and generate the funds needed for researching a cure. The fundraisers and events that LTF puts on are always fun and allow for people suffering with NF a chance to forget their worries and spend a day with their families. Also I am impressed with the determination of LTF to become a national even global presence in the NF community. As a small non-profit, I didn’t think LTF had much of a voice outside of the Fox Cities but as the summer progresses I’ve learned that LTF is already known nationally and we’ve even had a sponsored event in Africa! I am excited to continue working with LTF this summer and see what else we can accomplish for NF. Here at LTF we are asking people to give a little, because every little bit helps. “What’s your little?”

Americorps Blogs

My Soulution

It is hard to believe that the beginning of August is right around the corner already at the Littlest Tumor Foundation. My journey at the foundation thus far, has been a remarkable experience. Too often individuals disregard lessons learned along their life path. With the pull of the universe embedded in technology and the business of schedules, people rarely take the time to give a ‘little’, reflect a ‘little’, laugh a ‘little’ or volunteer a ‘little’. In finding a solution, I have learned that it takes a ‘little’ heart and soul.

Over these past summer months, putting my soul into creating awareness, promoting wellness, and developing research, has made the solution come alive in my heart. Being able to work with children who have Neurofibromatosis has been extremely rewarding. Courage and bravery in their smiles, and positive energy it their attitudes, has taught me that the fight is always worth it. Now, more than ever, I strive to be a part of the solution. Creating awareness has been a major part of my solution, as well as pushing myself to eat my greens and practice moments of wellness. It is the ‘little’ things that can go a long way and create a big impact. I often ask myself, “what is my little?” What can I personally do today to make a difference tomorrow? When I start asking myself these ‘little’ questions, the solution becomes achievable!

Emily Wagner

23 Year Old Female, Single and Seeking a Solution

This week wraps up out 30-day Awareness Campaign and the theme is Solution. According to Dictionary.com, there are three definitions of a solution.

1. The act of solving a problem, question, etc.: The situation is approaching solution.

2. The state of being solved: a problem capable of solution.

3. A particular instance or method of solving; an explanation or answer: The solution is as good as any other.

So what I have been doing to be a part of the solution? Well the answer is not simple because the problem of NF has not yet been solved but I feel my work and dedication to the cause and the Littlest Tumor Foundation have aided in the solution.

Being a part of the solution means stepping outside of one’s comfort zone, doing something daring and exciting, reading and research, creating activities and events for awareness raising, having an open mind and devotion. A solution is not always easy to come by but there are so many things to learn along the way.

During my short time with the Littlest Tumor Foundation, I have worked daily with Emily, the best coworker one could ask for. I have also learned a great deal and have been part of a multitude of work for the purpose of finding a solution, including: an expanded knowledge of social media, how to organize an entirely free three day retreat, created a month long campaign, have been featured on the radio and in the newspaper, have met celebrities who are also dedicated to finding a solution for those charities they support, written countless letters to media outlets including news broadcasting stations, magazines and newspapers, created a quarterly newsletter for our foundation and attended community meetings and events. Emily and I have worked tirelessly to be part of the solution and continue to give our talents, skills and vigorous passion to find that solution.

Please join us to keep the movement going. You can do so by writing your politicians, getting involved in an organization such as the Littlest Tumor Foundation, attending events and benefits put on for NF and for children, just taking some time to read up on the most recent research and scientific/medical breakthroughs, etc. Do what you’re able. Anything will do. We are happy to have anyone and everyone on board for the solution.

“The important thing about a problem is not its solution, but the strength we gain in finding the solution” --Unknown

Yours truly, Bailey Murph