Did you know..
May is NF Awareness month? AdvocureNF2 is dedicating the 22nd as NF2 Awareness Day. Why the 22nd? The NF2 gene is located on chromosome 22, and is where the mutation occurs in people with NF2 (Neurofibromatosis type 2).
Currently there is no cure for NF2, and surgical removal of tumors is widely used as the main approach. However, due to the fragile location that NF2 tumors arise from (brain and spine), the risks are much higher and may lead to devastating results. By raising awareness for NF2, we can show how urgent NF2 needs funds for a cure. Let’s get active and show the world the significance of May 22! We have provided the many ways in which you can contribute.
What you can do..
Attend or Create an NF2 Event
We make a louder voice in numbers, so join a fundraising event near you. If you attend, let them know you’re representing NF2!
Can’t find an event near you? Start your own!
Kim Walker, rallied her local neighbourhood for a Walk Your Wig for NF2 fundraiser, bringing together friends, family and the community to raise awareness and money for NF2!
Get Active on Social Media
For the month of May, raise awareness to those on your friend’s list by:
- Changing your Facebook/Twitter profile picture; CTF has a fun way to display the official NF colors over your profile picture
- Changing your Facebook/Twitter header photo; Sarah Gorden has created this beautiful banner found here
- Posting/tweeting an NF2 fact a day; NF2is.org has compiled a list that you can use
Tell Congress that NF Research is important to you!
The NFNetwork has typed up a pre-written letter urging members of Congress to add their name to support federal funding for NF Research, known as the CDMRP NF Program
Simply click here to sign your name and the letter will be sent to your congressman. Share the link and ask your family and friends to add their names to support federal funding for NF research!
Join the NF Registry
Another great way to represent big! Since NF2 is lesser known than NF1, we must not be overlooked. If you have NF2, click here to join the NF Registry at CTF. This registry has been created to collect data and gather statistics of people with NF. This has never existed before and will help:
- Identify people who may be eligible for clinical trials or other research studies
- Determine the commonality of specific NF characteristics to help researchers and doctors devise better ways to care for people with NF.
By partaking in the registry, your medical background can act as a guideline for the CTF team of NF2 experts who are working together to develop effective new treatments that will end NF2.
Put on your fancy dress to show that you support NF! Take a photo and post it up on Facebook to show your friends the purpose of the event.
Take the Fancy Dress for NF one step further by making it a public event! Lisa Tym asked her daughter’s school of 600 students to participate by donating 1 dollar to join. This in turn, amounted to $600 for NF2 research! Sometimes, just an idea can make a difference!
The color representing NF is blue. Proudly wear blue that day, and why not add some arm candy by purchasing a blue NF2 wristband, to show your support.
Thank you for supporting NF2 research!