For more information about CTF and our New York Chapter please contact Julie Pantoliano at 212-344-6633, ext. 8551 or firstname.lastname@example.org.
Be Heard. Join the NF Registry.
The NF Registry is an internet based resource for patients and medical scientists who care about NF. Patients (or their parents/guardians) can contribute their NF experiences to help inform the research community. They can also learn about clinical trials of promising new treatments. The NF Registry currently contains over 2,000 patient records, but it will take even greater numbers of registered patients to push for a better life for those with NF. Why?
- To call attention to how many we are – 120,000 in the U.S. alone
- To help understand why NF is so different from person to person
- To show we are a community that will come together to work toward treatments
- To accurately represent each type of symptom seen in NF
How does someone register?
- You need to have computer access. The computer can be yours, a friend’s or relative’s, or your local library’s. You create your own username and password so your information stays private.
- Go to www.nfregistry.org. Click on JOIN REGISTRY NOW (orange bar at upper right of screen).
- Create your account by filling out the information under “Create Your Profile”.
- Choose any user name and password you want. Keep it in a safe place so you can log back in.
- Read the Terms and Conditions. If you agree, check the box and enter the code as directed.
- You are now registered!
- Complete the survey questionnaire. You can stop and save the questionnaire partway through if you wish, and finish it later. The questionnaire should take about 20-30 minutes to complete.
Questions? Need help registering? Ask Pam!
Pamela Knight, Clinical Program Manager, Children’s TumorFoundation. Phone: 212-344-6633 extension 8555. Email: email@example.com
Help end neurofibromatosis by joining the confidential NF Registry. To learn more and participate, please click here: www.nfregistry.org.
Western New York New York Metro
We have some great fundraising events coming up, come and join us!
Nine-year-old NF Hero Malina, from New Lebanon, NY, has been designing and selling earrings to raise money for neurofibromatosis research. In just ten weeks she has made $1,200, half of which she'll donate to the Children's Tumor Foundation! If you are interested in purchasing some of Malina's earrings, please click on the link to her Facebook page below. Also, please share this page and spread the word. Thank you Malina!!! https://www.facebook.com/Earrings4NF
Staten Island Harley Owner Group keeps the holiday spirit alive on Staten Island for the Children's Tumor Foundation
During the event we were able to provide presents to each NF Hero that attended, all of which were donated by the riders and our sponsoring dealership Lombardi's Harley Davidson.
While we went there to help make the children and thier families happy, they allowed us all to expierence a gambit of emotions. To see the rough and tough riders with tears in thier eyes and smiles on their faces, you knew in thier heart they were happy to have participated in this event.
It's time for the3rd Annual Rochester, NY NF Walk to benefit the Children’s Tumor Foundation Sunday September 29th, 2013
Part of NY Mets Awareness Day:
*Includes ticket in the Pepsi Porch and T-shirt
*$10 of every ticket will be donated back to CTF
*Information table on Field Level concourse
*PSA on Citi Vision
*Spirit Award presentation behind home plate prior to the game
*In-game Awareness over PA/Scoreboard
Date/Time:Friday, June 28th at 7:10pm
Location:Citi Field NYC
CTF will mail your tickets to you by June 1st
Contact:Laura Perfetti firstname.lastname@example.org
Staten Island NF Walk, Saturday April 20th 2013 To Register Click Here
This is a great opportunity for children, family and friends to connect at a community event and draw support from each other while raising awareness and funds for neurofibromatosis (NF) research. NF is a genetic disorder that causes tumors to grow on nerves throughout the body. There is no cure nor are there effective treatments for NF.