Monthly Challenge
"Bring Change" Challenges!
In 2008, NFC is introducing the "Bring Change"challenge program. These challenges consist of little efforts that will make a big difference when performed by many people. Our board members and volunteers are wonderful people who are working hard to bring positive change for those affected by NF. But, California is HUGE! We need more manpower. By adding the strength of our vast membership, it will bring far more noticeable results. Some months, we might ask you to send an email, other times we might need to focus to be on updating our records. Most challenges will take only a few moments, but when our 1,900+ members invest those few moments, it will move NFC miles forward!
June's Challenge
Monthly Challenge: For June is simple - share your story.
As members of the NFC board, we have benefited through interactions with NF families around the state. Sharing our stories is therapeutic, but more than that, we have learned information that has helped us as parents of children with Neurofibromatosis. Much of the NF information a patient or parent knows has been learned through life experience. If others learned of those experiences, it could help lead them to finding needed support and/or medical care that might be otherwise overlooked.
So, our monthly challenge for June and July is simple –share your story. Tell us how NF affects your life and what you have learned that might help others.
For example, a mother of a child with an optic glioma was watching her son closely for signs of changes in vision. He could still point out birds in the sky and see things up close too, so it was a shock when his opthamology appointment revealed he couldn’t see things in the middle range. As a result, she has learned to quiz her son with flashcards held at varying distances to get a more accurate description of her son’s true vision.
Other patients and parents have found specific physicians especially knowledgeable about NF, support services that have made a difference, or facilities willing to go the extra mile. Sharing stories of those successes will help lead many others to finding the help they need.
So, please share what you have learned with us! We have a section of the website dedicated to NF stories –we would love to include your story in that section!
Do you have NF? Do you know someone with NF?
We would like to encourage others with your stories of encouragement. To submit your story please send an email with your story, pictures and consent form to staffwriter@nfcalifornia.org. If you would like to tell us your story over the phone send us an email with your contact information and when we can call you to set an appointment to talk.
May's Challenge
Monthly Challenge: YEA! Its May! Its National Neurofibromatosis Awareness Month! What are you doing to spread the word?
There are so many opportunities to help and ways to get involved. Read over this list and chose something (better yet, several things) to do this month to join the effort.
Encourage your local paper and television news to do a story about NF. Press releases can be sent directly from NF Inc. CA. Let us know you want one by emailing staffwriter@nfcalifornia.org.
Collect ink cartridges and cell phone to recycle for NFC. Gathering donations is a great way to introduce others to our cause! And, being green is a welcomed idea right now! Want to know more about this? Email info@nfcalifornia.org.
Write a letter to those in high places. Contact your favorite stars and let them know about NF. It seems simplistic but letters to influential people CAN make a difference. Many celebrities appreciate the opportunity to support a cause but know nothing about Neurofibromatosis. Your letter could be the one to inspire them to learn more.
Share the NF, Inc CA website with your physicians. www.nfcalifornia.org (Or the National site if you are an out-of-state friend) www.nfinc.org Our physicians would benefit from having a resource to share with newly diagnosed families.
April's Challenge
Monthly Challenge: We want you to thank our members for participating in our February Bring Change challenge!
The House Dear Colleague letters supporting NF research dollars were submitted to the subcommittees in March.
Now is the perfect time to call, fax, or email Senator Boxer and Senator Feinstein to ask them to support these essential Neurofibromatosis research allocations.
Senator Boxer has met with members of the NFC leadership, and we hope to soon gain her signature supporting NF research. To email Senator Boxer, visit https://boxer.senate.gov/contact/email/policy.cfm Her office phone number is (202)224-3553 and her fax number is (202) 224-0454.
Senator Feinstein is on the appropriations committee. As a result, she does not sign the Dear Colleague letters but is a person of influence in securing essential research dollars. When you contact her, please thank her for her past support and request her help is securing $20 million for the Armys NF Research Program for the 2009 fiscal year. She can be emailed through her website at http://feinstein.senate.gov/public/index.cfm?FuseAction=ContactUs.EmailMe. Her office phone number is (202) 224-3841 and her fax number is (202) 228-3954.
March's Challenge
Monthly Challenge: March’s bring change challenge is to participate in the NF Steps Run/Walk! Being held in Vacaville, California on March 15.
We would like everyone on our mailing list to feel included in the walk. Even those living thousands of miles from Northern California can participate!
We would encourage everyone living nearby to register and join us at Lagoon Valley Park on March 15th. The walk is such an uplifting event and will be even better with you there! Online registration is still open at www.nfcalifornia.org.
Those wishing to participate on a team might be interested to know that Team Buddy Bears Buddies (BBB) is still accepting team members. Everyone raising $100 in donations (and not already on a team) is invited to be a friend of Buddys! Join in the group photo and fundraising efforts! Email staffwriter@nfcalifornia.org to find out more about the BBB team!
Those unable to attend can participate in spirit through sponsoring a team! A few of the teams still recruiting sponsors are listed on the right hand sidebar. Look at the photos, read their descriptions, and let us know which team you would like to sponsor. Sponsorship funds can be sent via check or credit card. Just be sure to list the teams name in the memo section of your payment! (By Check - NF Inc. California, PO Box 1234, Vacaville CA 95696; Credit Card - http://www.nfcalifornia.org/Category.aspx?hCartCat=12)
February's Challenge
Monthly Challenge: February Contact your Representatives and Senators in support of NF research funding.
Members of the NF coalition (including two representatives from California) just returned from a successful trip to Washington DC. While there, they represented NFC at numerous meetings and interacted with our California Representatives and Senators.
In mid-February, Dear Colleague letters will be circulated through Congress in support of NF research. Inspiring our Representatives and Senators to sign these letters is now in our hands. NFC leadership laid essential groundwork - it is up to motivate our leaders to add their names to the list of others who support NF research.
So, prepare your responses. Write your stories. And, find others willing to support your efforts. Faxes and emails from ten people are more noticeable than a message from one.
Once the Dear Colleague letters are sent, we will have less than two weeks to gather our Congresspersons signatures. We will send sample letters and essential contact information at that time. We need to be prepared to act. Of our 55 Washington DC leaders, only four signed the letter sent in the fall. We can do better this year!
Out of state friends and family are encouraged to contact their leaders too. This is a national effort!
It is our job to let our Representatives know how essential this research is and that we expect them to sign in support of it. Together, we CAN make a difference.
January's Challenge is a scavenger hunt!
The walk is just a few months away and we want to make sure it is a memorable (and profitable) day. To do that, we need items for our silent auction, goodie bags, and raffle.
Rather than relying simply on the contacts of our committee members, we want to expand our search to cover all of California - and beyond. If you are out of the area, please feel invited to join the endeavor!
Some items to consider donating would be tickets to events, theme parks, and airlines. Electronics, bikes, and trendy toys are also great. Please call upon your business contacts and philanthropic connections to help us gather items this month. Then, email info@nfcalifornia.org to let us know what you found!