The Affordable Care Act: An NF Perspective

Affordable Care Act: An NF Perspective

On June 28, 2012, the United States Supreme Court upheld the constitutionality of the Affordable Care Act (ACA), originally the vote was tied, but Hon. John Roberts cast the deciding vote in favor of the act. Now many Americans will be able to have access to affordable care. For example, young people up to the age of 26 are able to stay on their parents’ health insurance coverage.Click here to read more!

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!

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!

NF and Families

The Fight Against Neurofibromatosis

Tumor growth in children affects families, too

By Kimberly Klessig

 

Health and nutrition play an important part in family wellness for children with health issues and their families. Both chronic and catastrophic health issues in children really have an impact on entire family units.

Neurofibromatosis (NF), a little-known disorder that begins in children with uncontrollable tumor growth in their bodies – such as in the brain and spine – as well as a series of other significant health issues, can create stress for children with the disorder and their families. First hearing the diagnosis of NF creates emotional strain for everyone involved.

Currently, there is no known cure or effective treatment for NF. The unpredictability of the tumors returning, even after surgery, can send children and their families on emotional rollercoaster rides.  The financial strain for medical expenses, such as chemotherapy treatments, surgeries, scans and procedures, can also take a toll.

One way for families to alleviate some of that stress over emotional and financial matters and to better focus on ways to balance the NF health crisis and to build wellness, are through family wellness retreats. These experiences are wonderful ways to provide families with opportunities to learn, educate and promote family wellness.

Family wellness retreats for parents of children with NF might include nutritional therapy, yoga, relaxation, doctor question and answer periods, group support building sessions and nature walks. They also provide time for families to strengthen bonds through the difficulties inflicted by NF and the stress of the treatments.

There is a lot of literature that supports that stress reduction and plant-based nutrition can have a positive effect in disease progression.

One technique that can help families reduce the stress from NF and its treatments is yoga. By doing yoga, participants connect with themselves and others around them in a healthy and relaxing manner. When done as a group, yoga can build bonds between NF families and create social networks that can last a lifetime.

By following healthy, plant-based diets at the wellness retreats, families reconnect with nutritious, wholesome foods. Families can easily make these simple recipes together at home after the retreat for very little cost. Despite the perils of childhood disorders and diseases, family wellness retreats are a great way for families to form connections with each other and cherish the time they spend together through healthy and relaxing activities.

Kimberly Klessig is a master of social work intern at the Littlest Tumor Foundation in Appleton, Wisconsin. The Littlest Tumor Foundation is a nonprofit organization with a mission to find a preventive therapy and treatment for tumor growth in children. The organization is dedicated to advocating for and raising research funds for NF, empowering families, and raising awareness. Services offered for NF families include: NF Family Wellness Retreats, NF Quarterly Talking Circles, NF Educational Webinars and a variety of fundraisers. For more information, visit www.littlesttumorfoundation.com.

Affordable Care Act: An NF Perspective

Supreme Court Decision Great News For NF Families!

Affordable Care Act: An NF Perspective

On June 28, 2012, the United States Supreme Court upheld the constitutionality of the Affordable Care Act (ACA), originally the vote was tied, but Hon. John Roberts cast the deciding vote in favor of the act. Now many Americans will be able to have access to affordable care. For example, young people up to the age of 26 are able to stay on their parents’ health insurance coverage. So far, up to 3 million young people are insured. Women will also greatly benefit from the ACA such as coverage of maternity and they will be covered for pre-existing conditions such as cancer. For many U.S. citizens, healthcare coverage will not cease during a difficult period when it would be needed the most in a person’s life. With this in mind, over 50 million Americans who would have otherwise have difficulties getting healthcare, now will have access. The article “At Risk: Pre-Existing Conditions Could Affect I in 2 Americans,” discusses this. Pre-existing conditions are defined as, “…is a health condition that exists before someone applies for or enrolls in a new health insurance policy…” (At Risk). It covers ailments such as cancer and diseases as well as high blood pressure. As we can see, the definition is fairly consistent. So what does this mean for NF families?

Now, NF families and children cannot be denied health insurance for the pre-existing condition of NF. Previously, if a child had a pre-existing condition such as NF, he or she could be denied insurance or the benefits could be limited in the coverage of insurance. This is catastrophic because of the high cost of the many surgeries or treatments a child or children may go through. Under the new healthcare act, no longer will NF families need to be financially strained to make ends meet for doctors’ visits, medication, checkups or surgeries. According to the online article, “The Affordable Care Act: Immediate Benefits for Wisconsin,” the act will also cover the treatments and therapies NF persons may have to undergo after a surgery or operation, in addition there will be no limit on healthcare. This healthcare act will help thousands of people with NF and their families through the difficult times that NF creates.

This act will go beyond helping those with NF, it will help people across the United States who try to make ends meet to have good and affordable healthcare for themselves and their loved ones. No longer will children with pre-existing conditions suffer from not having coverage for their ailments. With the new healthcare act in place, now millions of Americans, with or without NF can enjoy the assurance of having access to affordable healthcare.