NF Central Plains
News
The NF Network has made it easy for you to Make NF Research Happen!
Just take one minute of your time and click here. This link will allow you to email your Congressman and let them know that NF Research funding is important to you.
Date: Saturday, June 8, 2013
Time: 9:00 am - registration, 10:00 am - walk
Location: Macken Park (at the Festival Pavilion), 800 Clark Ferguson Dr., North Kansas City, MO 64116
Don't miss this milestone anniversary at one of our biggest walks! Food, fun and a chance to meet others with NF or those who have been touched with NF.
Registration is now open so click HERE to register and then set up your First Giving pageHERE!! First Giving is a fundraising website that allows you to design and personalize your own fundraising page. Be sure to add your team name and number to it and send it to everyone you know!
On February 4 and 5, 29 NF advocates convened in Washington, D.C. to educate Congress about the importance of NF research through the National Institutes of Health and the Department of Defense's Medical Research Program. The spokespeople were family members and patients who travelled from across the country to visit with Representatives, Senators and their aides. Nearly 150 meetings were scheduled.
Sharon Loftspring and her daughter, Elana, were part of that group. They met with representatives from Kansas, Oklahoma, Nebraska and Colorado. This was Elana's first visit to the Hill. She spoke about her experience living with NF and explained some of the manifestations of the disease. (One of the highlights of her trip was getting to meet a special guest who happened to be at the Capitol at the same time -- see photo to the right.)
The NF Network is requesting that Congress maintain the $15 million that the House marked for NF research for fiscal years 2013 and 2014. The group also requested that NF be listed as a priority in the NIH research portfolio. Although there is much uncertainty at this point regarding budget issues, and obtaining funding for medical research is particularly challenging, the NF Network is hopeful. Senator Harkin continues to be very supportive of NF research and will continue to fight for it until his retirement in two years.
Congress will need to solve the pending sequester issue before determining what funding will be available. Keep checking this website for updates.
One of NF Network's highest priorities is to promote federal funding for NF research. With the help of a professional lobbyist, the NF Network organizes an annual trip to Washington, DC to educate state representatives about NF and urge them to support this funding. Jeff Leibow, one of our national board members, participated in this year's trip. Jeff is one of the stars of the Las Vegas production of "Jersey Boys" and was featured on a Fox News segment last week. Click here to view the broadcast.
REMINDAR: Don't forget the Meet & Eat Social tomorrow night Monday 2/11/13 at RedRobin (7111 W. 95th St. off Metcalf, OVPK, Ks.) 6:30-8:00pm.
We'll supply the appetizer's & support - you come prepared to chat, listen, vent and meet with other parents, caregivers, or friends that know someone affected by NF. Please email us at nfcentralplains@gmail.com and let us know if you plan to join us. Hope to see you there!!!!
Courtney Dunn, DPT, PT, and her colleagues recently reported an association between low motor tone and brain tumors in children with NF1. In this study, recently published in theJournal of Child Neurology, Dr. Dunn showed that a specific type of reduced muscle tone may be an indicator of brain tumors in some children with NF1. While these results are exciting, they require further study to determine whether this finding can be used to screen children most likely to harbor optic gliomas. A prospective study is currently planned to study the value of this clinical observation in the management of children with NF1.
Read about "The Mean Gene" in this informative, but light article that recently appeared in the "Riverfront Times." It highlights some of the struggles that children with NF1 face and the progress that the NF Center at Washington University is making in connecting with NF families.
Please join us on March 20, 2013, for an all new webinar, "When to Worry about Cancer in NF1," presented by Dr. David Gutmann, director of the NF Center at Washington University. To register, click here.
We are having a problem with our phone number. So, if you need to get a hold of us, e-mail your phone number to nfcentralplains@gmail.com. We'll get back to you A.S.A.P.
We're heading to Washington, D.C. to ask for support for NF research. We need personal letters from you to take to your representative and senators. You can read an example letter from Nichole here.
- Your Name
- Your address
- A Photo (Optional)
