BE AN ADVOCATE - HELP SECURE ESSENTIAL RESEARCH FUNDING
Contact your Representatives and Senators in support of NF research funding.
The House has included $25 million in NF research funding in their version of the 2010 Defense Appropriations Bill. (YEA!) Now is the time to contact our Senators to request that they hold to that same amount!
If you are not sure what to say, use the sample letter links below. You can print, sign, and fax these versions, or use them as an example and create a more personal letter. Feel free to share your story and explain why NF research is important to you (and thousands of their other constituents).
Due to increased security, traditional letters through the postal system take weeks or months to arrive. As such, faxes, emails, and phone calls are the most reliable contact methods.
Senator Feinstein Support Letter.pdf
As a member of the Appropriations Committee, Senator Feinstein has great influence on this issue. She has pledged her support of NF research in letters our members have received in past years. In our letters to her this year, we want to thank her for her past support and urge her to continue to help us secure this essential funding.
Senator Feinstein's Washington DC office Phone: (202) 224-3841
Senator Feinstein's Washington DC office Fax: (202) 228-3954
Or, email her via her website http://feinstein.senate.gov/public/index.cfm?FuseAction=ContactUs.EmailMe
Senator Boxer Support Letter.pdf
Senator Boxer's Washington DC office Phone: (202) 224-3553
Senator Boxer's Washington DC office Fax: (202) 224-0454
Or, email her via her website https://boxer.senate.gov/contact/email/policy.cfm
We also highly encourage you to contant your Congressperson to thank them for the research monies included in their House version of the Defense Appropriations Bill.
House Support Letter.pdf
To find out who your Representative is and his/her updated contact information, type in your zip code at www.congress.org/congressorg/officials/congress
Another way to help - RAISE FUNDS
Printable Insert for Donation
Have you ever mentioned NF to a colleague, physician, or friend and had the other party respond with a frightened “Neuro-what?” Neurofibromatosis –the word itself brings fear to many. Some, because they are not sure how to pronounce it. Others, because they are far too familiar with the word and are scared of the complications it can bring.
One of the primary goals of Neurofibromatosis Inc. CA is to reduce that fear. At the most basic level, we teach others about the word –how to say Neurofibromatosis and how to better understand it. Because NF so directly impacts our lives, we are passionate about advocacy, medical advancements, and the hope for a cure. We don’t stop at the basics; we continue our quest and continue looking for others to help.
As we put the finishing touches on our upcoming newsletter, we are amazed at how much has happened during the past few years. We have hosted educational meetings, symposiums, benefit walks, and social events. We have networked with NF clinics and specialists. We have published NF literature and sent educational materials to physicians, families, teachers, and anyone willing to read them. We have reached out, listened, and shared. We appreciate those who have made our efforts so productive and petition for your continued support.
Our goals are ambitious. But they have to be. There is so much left to accomplish. We need to be able to offer more services to a larger group of people. Our NF families need events, the ability to be involved in the latest clinical trials, and a better way to store and access their medical records.
Our political leaders, corporations, and the general public need to learn more about Neurofibromatosis and the benefits of NF research. Public Service Announcements are an excellent tool to accomplish this, but our current budget does not provide the funds required to create them.
You however, have to power to fund them. Our mailing list includes 1500 of our most dedicated supporters. If each responds with a simple $10 donation, our PSAs will become a reality.
If members feel inspired to send $20, we could also establish the Personal Record Service so needed by NF patients. We encourage those with the ability to send $100 or more to do so. Donations to NF Inc. CA are fully tax deductible and are a wise investment in supporting those with Neurofibromatosis.
We dream of the day when we no longer need to plead for funding. For that day when appropriate treatments have been found and awareness no longer needs to be raised. But, for the time being, we continue in this quest. And, continue to ask for your help.
VOLUNTEER FOR NF Inc. CA
Join the NF T.E.A.M. Together-Everyone-Achieves-More
- Explain Neurofibromatosis to those you know and meet
- Volunteer to help with a project
- Volunteer to help with office work
- Volunteer to help at the next event
- Donate a raffle and/or online auction items
- Make a donation to NF, Inc. California
- Help us contact local newspapers, radio stations and TV stations
- Wear a NF wristband
- Help us collect signatures for Congress in February
- Purchase and wear “NF logo wear”
- Help collect old cell phones and empty ink jet and laser cartridges
- Tell your family, friends, neighbors, co-workers how they can help NF, Inc. California
Be creative and hold a fundraiser for NF, Inc. California in your home town
Here's a few fundraiser ideas:
- Car Wash
- Bake Sale
- Home parties (Tupperware, Avon, Mary Kay, Pampered Chief, Party Light, Jewelry, etc)
- In door gym day
- Host a dinner at a sit down restaurant or fast food chain
- School PTA’s penny drive, popcorn drive, trike~a~thon, etc.
Interested in getting involved with NF, Inc. California?
If we don’t have an event going on in your neighborhood and you would like to help in getting one organized, please call Debbie Bell at 707-469-0467 or email her at email@example.com
NFC is looking forward to having several "Dinners under the Harvest Moon" throughout the month of October. Dinners will be held throughout California as a fundraiser and a way to raise awareness about Neurofibromatosis. NF is not rare, but so few people have heard of it and hosting a dinner is the perfect way to bring positive attention to this essential cause. These dinners can be held at a restaurant, church, home, school, or other community center. Please contact Debbie Bell at 707-469-0467 or by email at firstname.lastname@example.org for more information about bringing a "Dinner under the Harvest Moon" to your area.
Holidays Around the World:
Event: December 12
Volunteer to help prepare for and host this event.
Holidays Around the World is a fun event for all ages and will take place in Vacaville from 10:00 am to 2:00 pm. We want to celebrate the holidays with everyone; which will include activities for all ages. If you celebrate your holiday in a special way and would like to share it at this event, let us know. If you are a teenager, we invite you to come to our Holidays Around the World. You can participate in all of the activities, or you can be a mentor to our younger kids as they decorate cookies, make fun crafts and eat lots of delicious food! Siblings and friends are always welcome.
Event: The first Saturday in June, annually
The NF Steps committee functions year round to make this event successful. If you live in Northern CA, please join us in making this year's walk the best yet.
NF Steps ~moving forward with hope~ Fun run: 5k fun run will take place at Vacaville’s Lagoon Valley Park. If you would like to volunteer the day of the event or with the preparation work, please contact Debbie Bell at 707-469-0467 or by email at email@example.com
If you have any questions please contact us