DC Advocacy!

This week Tracy and Lilla are in Washington D.C lobbying for the NF cause. We want Washington to know about the issue of NF and its affects on and families. Both in the Fox Valley and worldwide, we at the Littlest Tumor Foundation will be advocating for the continued NF research by the government.

In the meantime, interns back in Appleton are working around the clock planning for upcoming events at the Foundation. Don’t forget on February 23, 2012, we will be holding our ski-a-little benefit and talking circle at the Bubolz Nature Reserve here in Appleton. In addition, we are preparing for the crossover from our old website to our new website. Stay tuned for more updates!

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.

Little Sends Lots of Letters of Support

Since 1996, the Department of Defense’s (DOD) funding of the Neurofibromatosis Research Program (NFRP) has made important contributions helping people not only with NF but it also translates to cardiovascular, learning disabilities, war-related injuries, and other illnesses. The Littlest Tumor Foundation advocates keeping the research for NF ongoing. In order keep the DOD’s funding for the research going, the Littlest Tumor Foundation asked people throughout northeastern Wisconsin and beyond to sign a letter of support letting both the U.S. Congress and Senate that people wanted the research to continue. We went to the University of Wisconsin’s Oshkosh and Green Bay campuses collecting signatures of support and spreading the word about neurofibromatosis to students and others. Many people had not even heard of NF but when they did they were more than eager to sign the letter of support to potentially impact 175 million people. We had even met people who have NF as well!

After collecting the signatures, we sent out letters of support to our congressional representatives from the eight Wisconsin districts. We were able to meet with every congressional office and sentorial aide in both Washington D.C. and Wisconsin. When we got back in the Fox Valley region of Wisconsin, we had face-to-face appointments with Rep. Tom Petri in Fond du Lac, Rep. Reid Ribble and Tony, Senator Ron Johnson’s aide. At the meetings we discussed the importance of the DOD’s NF research and how it would impact millions of people in the US and abroad as well as raising awareness about NF. Since the sending of the letters of support and meetings, Representatives Reid Ribble, District 8, Gwen Moore, District 4, Tammy Baldwin, District 12, and Thomas Petri, District 6, have signed the letter. Thank you all who have taken a little time to sign the letter of support to continue the Neurofibromatosis Research program, our hard work has paid off thanks to you! In the end, we sent out 2,822 letters of support.