Wednesday, March 28, 2012

Little Attends an Alliance



On Wednesday March 21, 2012 two members of the Littlest Tumor Foundation attended the Mid-Day Women’s Alliance monthly convention lunch and speaker series held in Appleton, Wis. There, we also had our own booth and told the women from various professions about NF. Our table had leaflets about the Foundation and NF as well as the upcoming Kids-on-Chemo Drive on April 27 at Appleton’s Paper Discovery Center and the Sam-i-Am walk/run in May. Many of the female attendees were mothers themselves and could understand the affect that a health disorder or disease would have on a family. There were even a handful of people who knew what NF was because they had friends or were in the medical field. Not only did we inform others about our Foundation and NF, but we also got to network with other professionals whom we could do a partnership with in the future.

Monday, March 19, 2012

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.

Thursday, March 15, 2012

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.