NF Smarty Pants

Archive for the ‘Awareness’ Category

NF, Inc. Midwest director Diana Haberkamp will travel to Washington DC on February 9th to meet with a number of Congressional members to advocate for NF research funding. She hopes to be able to hand deliver letters of support from their constituents.

If you live in Illinois, please consider providing her with your letter of support. You may download the following two Senatorial letters below. Then, replace the information at the bottom with your own name and address.

Send them to Diana by email (diana[at]nfmidwest.org) or fax (630-932-8119).

• Letter addressed to Senator Dick Durbin (Word doc)
• Letter addressed to Senator Roland Burris (Word doc)

To find your Representative, enter your zip code at this website. Simply change the appropriate information in one of the Senatorial letters to create your new one.

The content for these letters were pulled from the one provided by NF, Inc.

Remember the doodle donated by soon-to-be President Barack Obama for Neurofibromatosis, Inc’s Doodle Day fundraiser? It went in auction to Wayne Berzon of Chicago for $2000.00.

Now, Mr. Berzon is using the doodle to raise even more money for NF, Inc. You can purchase all kinds of items through his Cafe Press store.

Read more about his effort here.

Kelly Walters, mother of three-year-old Courtney, shares her family’s story with the UK Sentinel. Courtney was diagnosed at 18 months.

Rick Guidotti is a professional photographer from New York. In 1998, he founded Positive Exposure. This not-for-profit organization seeks to present the beauty and variety of genetic diversity.

Rick was at the NF, Inc. Midwest Symposium in October of 2008. His wonderful portraits are available for viewing on his website.

Yvonne Foong, now 22, is a popular blogger and tireless advocate of NF awareness in her native Malaysia. During a recent tumor-removal surgery, they discovered that she had an inoperable tumor that if left alone will take away her vision. She is now remobilizing to raise the funds for this new procedure.

Jodi Harrington and Josh Howell have been hiking the American Discovery Trail for the past nine months. On Saturday, November 8, they reached the Pacific Ocean. Jodi has been hiking in honor of her friend Jeremy Eby, who has NF. Josh hiked for his mother and The Alzheimer’s Association.

Read about their last day on the trail at Jodi’s amazing trail journal.

The Sacramento Bee covered Jodi Harrington’s arrival in its town. There’s a great picture of Josh Howell there.

The Press of Millbury, Ohio has published a great article about Jodi Harrington’s Hike Across America.

Jodi Harrington and Josh Howell have reached Denver.

The Fort Morgan Times published an interview with Jodi Harrington and her hiking mates yesterday. Read her latest hiking journal entry here.