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. 

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Little 's big Welcome to Kim!

This week we welcome Kim, our new social work intern. She has been here for two weeks so far and loving it. She hails from Clintonville, Wis. and is currently studying in UW-Green Bay. Let’s learn a little more about Kim.

Hi NF community, I would like to introduce myself to everyone.  My name is Kim Burton and I am the newest intern at Littlest Tumor Foundation.  I am currently a student at UW-Green Bay working toward my masters degree in social work.  I grew up in the fox valley area and am happy to be back in the vicinity.  I left the area for about 10 years while I earned my bachelor's degree in biology from the College of St. Scholastica in Duluth, Minn.  Then I traveled to Nevada to volunteer with the Americorps. Later, I returned to Madison, Wis. after completing my assignment there and had been working hard to make a difference in that community.  I am excited to be back in the area and look forward to working with the LTF and learning and expanding my knowledge over the course of the next year.  

Little Launches a New Website

There is a lot of new stuff happening at the Littlest Tumor Foundation! We are going to be re-launching our website in August. In order to celebrate, we would like to invite everyone to submit a launch picture of their own. Send us a picture or post it on our event page on Facebook and the day that we launch we will pick a winner. The best launch will win. We would love for everyone to participate! So get creative, have fun and show us how you launch!

A Little Wrap-up

 Little Looks Back

Though NF month is now over, we held some GREAT events to make 2012 memorable! We really BLEW THE LID OF NF during May 2012 to let the world know about Neurofibromatosis and the great work done by the Littlest Tumor Foundation (LTF)! We kicked off the month with our awesome “Scream” picture letting the world know about Neurofibromatosis. Then we had our 24-hour up and down College Avenue in Appleton. We had some interesting interactions with the bar crowd…

Then we unveiled our insightful Human Health and Services with an insightful interview with Tracy and Sami. There was a great Derby Party here in Appleton to show support of NF research. Throughout May we papered races in the Fox Valley and Green Bay area to make people know more about our sam-i-am race.

We were on multiple news outlets in the Fox Valley area such as on three radio stations and three TV stations to let the world know about NF and our great events! We finally got to close NF month with our famous sam-i-am walk/run tumors I do not like them at Plamann Park. Here are some pictures that we can reminisce about the fun we had. Stay tuned for our next events coming up in June!

Little goes on a run and walk for the cure!

Sam-i-am… tumors i do not like them run and walk

On Saturday May 26, 2012 the Littlest Tumor Foundation held the annual sam-i-am tumors i do not like them, run/walk for the cure. The event was held at the scenic Plamann Park located in rural Appleton. There was a fantastic turn out of over 300 people, despite the earlier rainy weather. During the event, we gave out special kids' bags. We kicked off the event with kids' fun runs to begin the race.

Thanks to InstaPrint Plus for making all the yard signs and posters, Apple Creek Orthodontics donated the dental care items in the kids’ bags, Big Apple Bagels donated the tasty bagels, Premium Waters, inc refreshed us with bottled water and the Little Gym. A special thanks to all of our interns and volunteers, as well as those at Plamann Park for letting us hold our event there. You are all so awesome! See you next year!

Little's BIG Social Advocacy Effort

Social Advocacy Efforts

By Kimberly Klessig, Masters of Social Work Intern at the Littlest Tumor Foundation

Over the past few months, we at the Littlest Tumor Foundation have been working extremely hard advocating for support through the Federally Funded Neurofibromatosis Research Program. Through this process, it was great to be able to spread awareness at the University of Wisconsin Oshkosh and Green  Bay campus. There, we obtained signatures from students and staff members who showed their support to continue NF funding by sending a letter of support to their legislators. Other people also signed the letter in support of our cause; I reached out to family, co-workers, and classmates.

   Within a few weeks, we obtained 2,822 signatures and after sending letters of support there were four representatives that signed on! Last year, ZERO of the representatives signed and this year HALF of Wisconsin district representatives signed for their support! This was a HUGE accomplishment!

I also talked to campus organizations such as Circle K, Titan Volunteers and the Social Justice Club. All of these groups took interest in either volunteering, being educated about neurofibromatosis and/or agreeing to participate in future advocacy efforts next year for campaigning and outreaching to the larger community.

Other advocacy initiatives included my supervisor going to Washington D.C.  where she spoke with the staffers directly about neurofibromatosis. I contacted the Wisconsin legislative individuals, who signed in support for NF Funding, to have them hold a “tumors in children we do not like them" sign.

Although it took a lot of time and effort I found that…ADVOCACY WORKS!! I will continue to advocate for NF by continuing to educate and present at a variety of organizations, businesses and community. My dream is to someday have helped in making a difference for NF families!

Little Walks for 24 hours

On Friday May 4, 2012, we at the Littlest Tumor Foundation kicked off NF awareness month with our 24-hour walk up and down College Ave. in Appleton, Wis. This year we started at 10 a.m. Friday morning and walked to 10 a.m. Saturday morning. For the course of the walk we held signs that said, “tumors in children we do not like them,” we walked through the nice, sunny May weather all the way to bar time with its abundance of inebriated drinkers and through the rain that started around 2 a.m.!

The Copper Rock provided us with a place to stay for the night as well as great coffee. We even got a ½ page article in the Appleton Post-Crescent. Over the 24-hour walk, 30 people joined us as we raised awareness about NF. Even some onlookers joined us for our cause! We are dedicated to raising awareness about NF and of course, having a little fun to. We want to say THANK YOU to all our walkers and all of the people who gave donations. We want to especially thank the Copper Rock coffee house who donated coffee and a place for walkers to rest between shifts. The walk is just one of the many events that are occurring this month to raise awareness about NF. Stay tuned for more event dates and times! 

Little's Big Thank You and Big Farewell

As I look back at this year’s Kids-on-Chemo Drive, I cannot help but feel overwhelmed with gratitude. The Fox Valley community rallied behind us in a big way! Littlest Tumor Foundation found themselves supported by a complete mix of community members including: fire fighters, neighbors, college students, schools, family, friends, and the list goes on... 

This particular Kids-on-Chemo Drive was a stand-alone event for the first time ever! It was a big task but the LTF crew pulled through with A LOT of help from volunteers, community members and participants.

The stars of the night, the headshavers, did an incredible job collecting pledges. No matter how big or small the amount collected, the donations we received will go to a great cause! I think a little recognition is in order:

Our Sami Cup recipient, raising $2900, was Linda Elliot. This was the second year she shaved her head for this event and we are so happy Linda uses her incredible drive to further our cause.

Other headshavers include Paul Williams, Kevin Martinson, Adam Mohr, Justin Dull, KC Stadler, Ryan Lee, Nick Davidson, Boyd Van Landghen, Zack Akin, and Brent Debenedet. We even had a few people sneak in without giving us their names! That is how eager the community was to help! In addition to headshavers, three lovely ladies donated their hair for Locks of Love: Kali Thompson, Sara Burns, and Megan Mau. 

Another key part of our event was our volunteers. We recruited the most amazing volunteers we could find! We wanted to give a BIG thank you to all those who donated their time and efforts to making this event the great success it was. 

This event also marks the end of my internship with the Littlest Tumor Foundation. What an experience! If I had to pick the most important thing that I am taking away from this experience, it would be this: Everyone wants to be a part of something bigger than themselves, even if it’s in a little way.

I am very thankful that I could be a part of the beginning stages of a foundation surely destined for greatness.

Little Holds a BIG Event Kids-on-Chemo Drive

It’s almost here! Our Kids-on-Chemo Drive is only a few short days away on Friday April 27, 2012 from 6 p.m. to 8 p.m. at the Paper Discovery Center in Appleton, Wis. We at the Littlest Tumor Foundation (LTF) have been working-around-the-clock to create a fun-filled event for everyone! Gather up all your friends and family as we raise awareness about children who live with the affects of chemotherapy due to neurofibromatosis (NF).

We will have fun activities for everyone. There will be games such as bag toss, paper making for all ages, faux tattoos, bubbles and a photo booth for all your pictures. There will also be a scavenger hunt for children as well as a mustache wearing event. Do you have a shout out or a wish to give to the NF community? There will be a wish wall for you to sign your thoughts and wishes.

There will be food and beverages available at our event. Stop by our juicer station to quench your thirst with one of our great recipes. Looking for a way to show your support for NF families?  You can shave your head to show solidarity with kids who have gone on chemo. You can also show your support for NF individuals and their families by getting purple hair extensions done by Aveda salon.

Don’t forget our Animation Launch that will be taking place. We’ll be unveiling our Animation Launch for the entire world to see!  So get all your friends and family members together for a night of fun and a good cause for the Kids-on-Chemo Drive at the Paper Discovery Center in Appleton!

A Little NF Talking Circle

On March 11, 2012, the Littlest Tumor Foundation held its first quarterly “NF Talking Circle” at the Medical College of Wisconsin in Milwaukee, Wis. Present were adults, kids and families that are impacted by NF.

In the circle, people discussed their NF journeys with each other. It is powerful to talk with others who understand your situation. Meanwhile the children did activities such as painting, thank you card writing and game playing. Healthy snacks such as apples, blackberries, pita chips and hummus were provided. Beverages such as coconut water, along with pineapple and orange juice was served. At the conclusion, many of the attendees enjoyed the circle and it was decided by LTF leadership the “ NF Talking Circle” was a success and will be held again in early summer 2012.

Interview with Rosie's mom

Please tell me about your family’s NF journey.

Rosie was born with café au lait spots and we didn’t think anything of it; I thought they were just birthmarks. At her six-month check up the doctor counted five spots on her body and mentioned neurofibromatosis,but said not to worry unless she had 6 or more. I took her home and found eight. I called him back and said, “now what?” the doctor then referred us to the NF Clinic at Children’s Memorial Hospital in Chicago. Rosie had her first NF clinic visit at 10 months old.

But it wasn’t until her third birthday that she was officially diagnosed with NF1;waiting for the official diagnoses and seeing the disorders indicators come out in her made for a very frustrating two years. Just after her diagnoses, she began randomly throwing up and was also very lethargic. Her pediatrician wanted to treat her for acid reflux, then it was “maybe she just can’t shake a virus”. But I knew in my gut something was really wrong, so I contacted the NF specialist and asked if he had seen this type of thing before. He wanted her in for an MRI that same day. The MRI revealed that she had an inoperable brain tumor and acquired obstructive hydrocephalus. It was the most devastating news I have ever received. We were faced with our child having brain surgery and placing a shunt in her brain to work as a drain for the excess fluid; it all happened so fast.

To date, Rosie has had thirteen surgeries, five of those brain surgeries due to shunt malfunctions. The other surgeries were due to other complications. NF caused the brain tumor, but the brain tumor’s location has caused all of Rosie’s other medical issues. For example: she has growth issues. At one point she was growing at a rate of 11 inches a year. It’s called Pituitary Gigantism. With Rosie, the growth hormone is on full-blast. She is the height of a nine-year-old despite being only seven. I remember when I had to buy her new shoes every month or so--it was crazy. I have to give her injections everyday to try and control the growth hormone. Since 2009, the growth hormone suppressant is working, but now I can see she’s going through another growth spurt, so we don’t know if it's working now, or needs another adjustment.

We’re running out of options with what can be done for her. With her it’s trial and error with treatment because of her particular diagnosis of NF; she has a very rare and complex case. We live day-to-day and try to make the best of it. She’s definitely a very special kid with what she’s going through. The toughest question she’s asked me was, “Am I gonna die?” Talk about heart wrenching, but we don’t lie to her, “everyone dies Rosie”, I can remember saying, “but most people just die when they’re older, like Nana.” She has seen too many kids loss their battles.

This year, her New Year’s resolution is to live to be 10. She is staying strong and living for the moment. She’s a positive kid; loving, caring and compassionate. She’ll comfort other kids in the hospital who are going through a hard time. No matter how long she’s here, she is leaving her mark on this world.

Rosie enjoys spreading joy, sunshine and hope every where she goes. She has spoken at two different high schools about blood drives and as a result they had a record number of kids sign up to donate blood;the impact she’s had is amazing. She’s also providing toys for family BINGO night for the Littlest Tumor Foundation’s Wellness Retreat. She’s raised over $300,000 for her causes and she’s collected thousands of toys for Rosie’s Toy Box. Rosie will talk to anybody and promoting her Toy Box (www.Research4Rosie.com) anywhere. She’s always busy doing something. Rosie has plans for the year for all the different things she wants to do. She even has a little rap that she has to introduce herself. She’s learned to take a challenging situation in her life and turn it into a positive one for everyone around her.

What type of neurofibromatosis does she have?

The short answer NF1. The long answer, Rosie has a very complex and extremely rare case; a combination of medical diagnoses. Her case has never been seen before or since her diagnosis. That’s the weird thing about NF, every case is so unique. It’s the same, but very different, the way NF manifests itself in each individual; it’s a mystery, so unpredictable.

Because Rosie has a very distinct set of syndromes, conditions and disorders that come together to make a very unusual case of NF. The “norms” that doctors have seen with other NF kids are atypical for Rosie. She is often times teaching her doctors, just how to treat her NF and brain tumor.

How is Rosie’s spirit through all this? I’ve heard she’s got a super-upbeat shiny personality.

She’s an amazing kid; very inspiring! She’s very charismatic and can strike up a conversation with almost anyone. I certainly can’t take all the credit for it, it’s God given. But it also has to do with the way we’ve handled all her medical issues, how we approach it. She knows she can trust us, that we are honest with her, we don’t dumb things down. We tell her in words she’ll understand and not sugar-coat things, she knows what she’s facing and she comes to terms with it on her level. I remember when Rosie was really little she was taking a bath and tried washing off a brown spot on her leg; I told her it was one of her NF spots. Later I had given her a brown-and-white spotted dog and Rosie said the dog had NF too. We told her from day one, that she had NF, how it made her special; that God made her that way and she should be proud of who she is, it’s apart of her, it doesn’t define her. I think that lots of kids have parents who want to hide it; I think it makes them feel ashamed, like it’s something they shouldn’t talk about or share.

Discuss how her sibling supports her.

Bella is very supportive of her sister, but it’s really tough on her too. She goes through a gamut of emotions with her sister’s conditions Being jealous of the attention Rosie gets, then feeling guilty for feeling jealous because she understands that Rosie has to have our attention at times, feeling angry because she got stuck with a sister with NF and cancer, but at the same time knowing Rosie didn't choose this life either. They share all the usual sibling rivalry like any other family. But she’s there for Rosie 100% and she chooses to be apart of everything, and she does have a choice, I think that’s important. When Rosie has a surgery, Bella is right there sitting on the hospital bed with Rosie, talking to her or watching TV with her before she has to go in. As for her personality, she’s a little quieter and isn’t nuts about the limelight, but she’s learned to speak her mind by listening and watching her little sister. Bella is a stronger person because of what she’s gone through with Rosie; she’s empathetic and very loving.

What are some ways your family has raised awareness for Rosie?

I publicly speak and raise awareness in anyway I can. We’ve educated family, friends, neighbors, other parents and classmates--our community really--about NF. At one time, some of the kids and even parents at Rosie's school worried that Rosie's NF was contagious. I’ve also learned that sometimes people don’t even know they have NF or weren’t told about it until later in life. Some pediatricians don’t even know about it. At least ours knew about the café au lait spots and had enough knowledge of its existence to refer us on to Children's. There have been nurses who have “heard about it” but have never come into contact with people who have had NF, while other nurses don’t even know about it. We take that opportunity to teach them; Rosie will lift up her shirt and say, "see" so they recognized it the next time they see it on another child We’ve even tried to get on Oprah and now we are pushing to meet Ellen DeGeneras. We have been incredibly blessed with all the people who have supported us; without all of their love and support we just wouldn't be able to reach as many people as we do. Both the girls were also adopted by teams through Friends of Jaycln Foundation. Rosie has two teams at North Central College in Naperville and Bella has one here in Palatine, the FREMD girls swimming and diving team. They love it! Rosie tells me everyday to live for the now, in the moment, to have hope, love and humor in our lives to say how you feel today and don't wait for tomorrow. She is a blessing in my life

What are some words of advice that you have for other families who have children with NF?

To be honest with their children and not make them feel different in a negative way. To help their child to be proud of who they are. They should surround themselves with knowledge, because knowledge is power; make a difference, get involved. We could sit around feeling sorry for ourselves, feel bad that NF has touched our lives or we could get off the couch and go do something about it. The best advice I can give to a parent of a child with NF is to be honest with your kids. I’ve met people who don’t know what to tell their children about NF. Get the support of others around you. Connect with other families who are going through what you are, who really "get it", who understand. There is this one family, whom I have never met in person, in Minnesota where they too have to cope with a loved one having NF. We support each other.

Rosie reminds us all to live life to the fullest. There’s this one commercial on TV and there is this woman standing on top of a mountain and Rosie said, “That’s the way we need to live mom.” – Overcoming everything and staying positive through whatever live throws at you.

Check out: www.Research4Rosie.com

www.youtube.com/watch?v=XaS7RMn_LXI Join: www.carepages.com/carepages/Rosiespage

Friend Rosie on Facebook! "RosieRose"

Follow Rosie on Twitter! "RockStarRosie1"

E-mail: RosiesToyBox@gmail.com

Kristi Hopkins NF author blogs for us!!

Reason I wrote the book.


For years I lived my life hiding and denying the symptoms of Neurofibromatosis. When a doctor finally "officially" diagnosed me, in 2007, hiding was no longer an option.


It was time to face NF head on! At first facing NF was met with anger and frustration and I was becoming just like my mother.


One day, after a particularly negative blog post, my husband asked me a question, that changed my perspective forever. "Kris, I love you, and that's a great blog post....But, what if you change the way you look at NF....Why not start inspiring people to do more than just survive NF?"


That day, 'Thriving with NF' was born, and became the start of a life-long process, that I try to live up to every single day.


After a year of sharing my stories on my blog, my husband and I talked about how neat it would be, if we turned all those stories, into a book.


We worked for a year. It wasn't easy to understand that people would really want to read about my life. I kept fighting my husband and he fought back...


I never realized how many stories I had. I never realized that my attitude switch would go on to touch so many people.


Now "Thriving with NF" has become a way of life. A bar that is set, that I try to reach every single day. Some days I do better than others, but the important thing is, is that I try!

Americorps goes Little

Hi there! My name is Bailey and I’m a recent college graduate. Upon my graduation, I set out on an adventure to find something new to fill the free time that was to come. Lucky for me, I found the Littlest Tumor Foundation. Before applying for my position through AmeriCorps, I had never heard of the organization before but was intrigued and continue to be everyday. Like my AmeriCorps and Littlest Tumor Foundation partner, Emily, I knew nothing about Neurofibromatosis (NF). According to the National Institute of Neurological Disorders and Stroke, “The Neurofibromatoses are genetic disorders that cause tumors to grow in the nervous system.” After learning about the diagnosis, I was dumbfounded that it was a new topic for me and for those around me. How could I not know about this?!? How do I learn more? And finally, what can I do?!? These questions seem simple enough to answer right? Well, I’ve been answering them, but its been a day to day to day process. There is always something to learn and people to educate, which is no small task but I’m willing to hit the ground running.

Littlest Tumor Foundation is a remarkable organization with a bright future. The foundational building blocks of the organization include: Awareness, Wellness and Volunteerism. Not only are these outstanding goals for a foundation, but for one’s personal life as well, especially the life of a recent college grad. I look forward to my work with the Littlest Tumor Foundation and helping the organization to accomplish these goals locally, nationally and internationally. I also hope to make my own changes and incorporate Awareness, Wellness and Volunteerism into my daily lifestyle and I hope others are willing to embark on a journey of self improvement that include these goals as well. My motto is, “Be the change you hope to see in the world.” Props to Ghandi for the brilliant quote. Join me and the Littlest Tumor Foundation to be that change and make a better world for children with tumors. Lets work together to cure NF!!

Engaging in a Cure!

Wednesday June 8, 2011

Wellness is a lifestyle that has the power to heal. As a new AmeriCorps member working with the Littlest Tumor Foundation, I believe this statement is absolutely true. Before I began working for this foundation, I knew very little about Neurofibromatosis, let alone had even heard of it. I decided to dive into researching the illness and learning all I could about individuals dealing with NF. Neurofibromatosis effects 1 out of 3,000 people, which is much more common than one would think. Even though I have only been working for the Littlest Tumor for a week, I am extremely excited to embark on an incredible journey in making NF preventable. As a recent 2011 graduate from UW-Stevens Point, I graduated with a double major in Interpersonal and Organizational Communication and International Studies. My career goals are centered on improving and inspiring lives by working at the root of an aggressively passionate non-profit organization. Through the foundation’s holistic approach and dedication, families and children are helped each and every day. The Littlest Tumor Foundation is the inspirational grassroots organization I was looking for and I am thrilled to be a part of the cure this summer.

run little run

We have a running endurance team run little run and everyone can join us. I am an NF runner mom wanting to raise awareness about NF and our foundation. I am going to run as many 1/2 marathons as possible in our state of Wisconsin this year. Join me! We will add your story to ours.

Instep Icebreaker Indoor Marathon: #1

Ice Breaker: 1st half of the year. Well I will admit I was not trained for this race . It was slow going and I could tell by the peoples faces cheering they knew I was digging deep. The race is held at the Petit National Ice Center in Milwaukee. There were a few great things that stood out at this race-- One you were able to watch Olympic Speed Skaters train. It was truly amazing to watch them skate. Another great thing about this race is that it is green. You call out your number as you round the water station and someone gets your water bottle to you. Lastly, the volunteer and race staff were so encouraging on the course of many laps.