NF Smarty Pants

Archive for July, 2008

Located in Johnson Park of Walker, Michigan, this is the 22nd annual summer potluck of the Support Group of West Michigan.

The Children’s Brain Tumor Foundation is holding its 8th Annual Kids Cruise on July 26, 2008. The three-hour party cruise will go down the coastline of Manhattan.

If you have NF1 and are 18-years-old or over, you can help out on a quality of life study sponsored by Johns Hopkins University and the National Institutes of Health. The survey is available online and should take about thirty minutes to complete.

Actress Gillian Anderson is auctioning many of her collected The X-Files memorabilia on eBay over the next few weeks. She’s designated Neurofibromatosis, Inc., as one of her beneficiary charities.

Currently, there are two auctions for NF, Inc.:

• Meet Gillian before the July 23 Los Angeles premiere of The X-Files movie. Receive two tickets to the screening. (ends July 17)
• Meet Gillian at the July 24 taping of the Jimmy Kimmel Show in Hollywood, California. (ends July 20)

The new X-Files movie opens in the United States on July 25. Gillian’s brother has NF, and her mother has been involved with NF organizations for many, many years.

For ten hours this Saturday, twelve different bands will play a benefit concert for the Children’s Tumor Foundation. Concert for Noah starts at 1:00 pm at Yack Arena in Wyandotte, Michigan. Tickets are $10 each.

The event is also in need of additional volunteers.

The 2008 NF Conference took place between June 6 and June 10 of this year in Bonita Springs, Florida. Over two hundred researchers attended. You can download the conference report here.

Jodi Harrington and Josh Howell have reached Denver.

On Saturday, the North Tonawanda (New York) Department of Youth, Recreation and Parks will hold their 3-on-3 basketball tournament. Proceeds from the benefit will be donated to Leah Manth, who was the center of the Run4Leah effort at the Buffalo Marathon earlier this year. Leah is eight-years-old and has NF2.

The news and this blog have been following the story of James O’Neal, a Safeway employee with NF who has captured the attention and support of his community. James is seeking tumor removal surgery but lacked the funds. People like Katie Knopf and the Friends of James O’Neal have joined the effort to raise the needed amounts.

The Seattle Times updated the effort last month. Today, the local Washington ABC station reports that Safeway stores in Washington, Montana, Idaho, and Alaska will start displaying canisters to increase the fundraising effort on behalf of its employee.

Highland High School in Highland, Illinois, recently cut the ribbon on a new wheelchair access ramp and viewing area for their football field. This ramp is dedicated to Joey McCubbins, a student with NF and who died from cancer in 2006. A joint project between the McCubbins family and the school district, the wheelchair ramp is a fitting tribute to this long-time football team manager and fan.