Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never even heard of it. NF Awareness Month is celebrated each May and is dedicated to raising awareness for this rare genetic disease, as well as educating others and supporting fundraising/research efforts. Awareness is a key component in increasing the focus of medical research into neurofibromatosis—which leads to both advancements in pain management and hopefully, one day, a cure. Here’s how you can help:
How You Can Help
May NF Awareness Month Proclamations
It is a longtime tradition that Governors around the Northeast sign proclamations declaring that May is Neurofibromatosis Awareness Month. When scheduling allows, the Governors meet with local NF patients and families for photo opportunities.
Talk About Neurofibromatosis
One of the biggest obstacles we face in providing support for NF patients and families is the lack of knowledge about neurofibromatosis. Talk to everyone you know about neurofibromatosis. Teach them how to pronounce it: neuro-fibroma-tosis. Let them know that NF affects more people than muscular dystrophy and cystic fibrosis combined. Tell your friends and family about NF research, and how it will help anyone suffering from similar symptoms. The more we spread the word about neurofibromatosis, the more we are helping each other!
Follow Us on Social Media
Follow us on your favorite social media channels to hear the latest news, connect with others in the NF community, and stay updated on our upcoming events and volunteer opportunities!
Help Promote Government Funding of NF Research
Since 1996, NF Northeast has been an active member of the NF Network, an advocacy group that works with Congress to promote government funding of NF research. See What We Do. It is important to note that this funding goes to scientists who apply for grants through a peer review process. NFNE receives no government funds.
You can help by writing to your representatives in the House and Senate and tell them that you want continued, and increased funding for NF research at both the National Institutes of Health NIH and the Department of Defense’s Congressionally Directed Medical Research Program CDMRP.
Here is a sample letter for you to use.
To find your representatives in Congress click here, and please take advantage of our Advocacy Toolkit.
Plan a Fundraiser
NF Northeast depends on support from people like you; 75 percent of our income comes from events and fundraisers, which means we need your help to raise money. Consider planning a small event in your community, such as a bake sale, or a spare change collection drive on behalf of Neurofibromatosis Northeast. Or, perhaps you could organize a golf tournament or road race. Many of our friends have set up their own fundraising websites – click here to see how easy and effective they are. Need an idea? Call the office, or email us for suggestions. Read more about Do It Yourself Events.
Buy/Sell a Home with Trish Mahoney
Local real estate agent Trish Mahoney began her Real Estate Commitment Program titled “Eryn’s Angels” in memory of her late daughter Erin, who passed away after a courageously fought battle with neurofibromatosis. Trish has generously pledged to donate 10% of all commissions made through her real estate transactions to NF Northeast, in honor of Erin.
“Erin was the most beautiful, kind soul and while she is no longer here… another life cut short because of NF… this is to do something good. The buyer or seller would be doing the purchase/sale of a home anyway—by choosing me I promise honesty and integrity. They will be treated like family.“
“The heart of it is to keep her memory alive, while bringing light to NF and all the complications (medical, societal, emotional) that come with it. To bring awareness to the disease, while still offering hope.”
Recycle cartridges and cell phones for NF
We recycle through the FundingFactory www.FundingFactory.com. Our ID# is 43816. You can either save your cartridges and cell phones and deliver them to our office, or if you have a business, you can register with FundingFactory and provide our ID# 43816 as the charity to benefit from your recycling. They will provide the shipping boxes and everything you need to start recycling. There is no cost for you to participate. To become a business supporter you can register on their website or call FundingFactory at 888-883-8237
Donate to NF
Your support is sincerely appreciated and will assist us in our mission to find an effective treatment and the cure for NF. To make a secure electronic donation, please click the Donate button below. You may designate your gift to be in Honor or in Memory of someone or to a specific fund.
Please make checks payable to NF Northeast and mail to:
9 Bedford Street
Burlington, MA 01803
For more details about how your donations help please visit our DONATE page.