10 Things to be Aware of on NF Awareness Day

May is NF Awareness Month, and in a particular effort to help get the word out, we have designated Thursday, May 20 as NF Awareness Day.  Please share this article with friends and family to help us get the word out and end NF!

10. Neurofibromatosis (NF) affects more than 1 in every 3,000 children born each day (more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined) (learn more).

9. It only takes eight to 10 letters from you and your friends to your state representatives for them to begin noticing that NF is a REAL issue. (learn more).

8. NF research is shedding new light on cancer, brain tumors, learning disabilities, and bone abnormalities – ultimately benefiting the broader community and those with NF. (learn more)

7. On May 8, 2010, in Greensboro N.C., there were more than 1,700,000 steps taken to find a cure for NF at the first North Carolina NF Walk (learn more).

6.  The NF Clinic Network now has 42 recognized centers throughout the country (learn more).

5.  This year, Racing4Research completed 611 Laps in the Rolex 24 Hours at Daytona International Speedway raising spirits, funds and awareness for our NF Heroes! (learn more)

4. To date, the Foundation’s investment of $700,000 in the Drug Discovery Initiative has returned $3.7 million in follow-on funding. Every dollar counts. (learn more)

3. In 2009 more than 1,500 Runners in neon NF Singlets crossed finish lines in 50 races nationwide for the NF Endurance Team.(learn more)

2. There are three forms of neurofibromatosis: NF1, NF2, and schwannomatosis. Each can cause tumors to grow on nerve endings in or on the body. (learn more)

And the No. 1 thing to be Aware of on NF Awareness Day: Every day NF research is moving closer to treatments and a cure for the many manifestations of NF. Your continued support of this critical research is improving the lives of millions of people as we work to end NF.

The Hardest Part is Putting on Your Shoes

Two brain surgeries, one spine surgery, four eye surgeries, one auditory brainstem implant, and he’s one of the lucky ones, he said.

Matt Hay has Neurofibromatosis, Type 2, but while NF makes some things in life a bit harder for him, Matt hasn’t found anything that has been impossible.

Following a spinal surgery to have one of these tumors removed, Matt was unable to stand or walk. “I remember asking the doctor if that function would return and he replied, ‘It should,’” said Matt. “Should? Uh thanks.”

Months of physical therapy took him from a wheelchair to a walker to a cane. “I then made up my mind that I was going to celebrate my progress by running a marathon on the one-year anniversary of that surgery while raising some money and awareness for NF at the same time.”

That was a few marathons, half marathons and triathlons ago, but since there isn’t a cure for NF, he keeps lacing up his shoes. When his daughter, Maddie, was two, she said, “Daddy, maybe I’ll fix your ears for you.” It has been two years now and Matt jokes that her neurosurgery skills haven’t improved and he still will run for a reason — curing NF. He and his wife, Nora, will be on the course at the Indy Mini Marathon wearing on May 8, 2010.

“I think what CTF is doing is amazing,” said Matt. “This increased presence at events is also evidence that what the CTF team is doing is really working in terms of raising interest, awareness, support and money.”

Matt first found about NF Endurance after meeting Steve Kendra one year during the Chicago Marathon. “His [Steve's] enthusiasm and support really raised the bar in the professionalism, organization overall team spirit of the event,” said Matt. As a result, he and his wife, Nora, have run as part of the NF Endurance Team in many more races including the Myrtle Beach Marathon and the Indy Mini Marathon. His goal for the 2010 Indy Mini is $7,500 and he has raised $6,988.79 to date.

Matt and Nora have helped the team as both runners and supporters and find both roles equally challenging. Navigating closed streets and the ‘L’ in Chicago, surrounded by close to one million people at 7:00 a.m. on race day, can be just as tiring as running 26.2 miles. “I want all of my friends and family to know that for the runner nothing about the race is as rewarding as seeing such great support cheering and holding signs up when the miles seems to get longer and legs get heavier.”

And even though he has multiple races logged, there are still days when he can’t find the time or energy to run. Matt champions the words,  “the hardest part is putting on your shoes.”  “Once I get my shoes on, everything else seems to fall into place…know that you aren’t alone and that most people crossing the finish line on race day started that way too.”

He has chosen to focus on the things that he can do. He has poor balance and can’t ride a bike; he finished his first triathlon on a recumbent trike. He has nerve damage from brain surgery that causes his left eye to  get dry; he bought sunglasses with foam lining. And, he jokes that his 4-year-old can almost read now because she has never seen a TV in their house without closed captioning.

A few years ago Matt was told that he could get a discounted train pass for his daily commute to work because of his hearing loss.  “I remember thinking, ‘Wow, these train people think I’m disabled,  but I bet they aren’t running marathons!”

“Having NF is just a part of who I am,” said Matt. “I don’t know if it is by choice or circumstance, but I ‘m fortunate to have a pretty positive outlook on my life.”

Click for a Cure

Click for a Cure
The Minnesota Timberwolves Fastbreak Foundation along with NRG Energy Center present the 2010 April Grant Voting. Your daily vote through April 12th can help the Children’s Tumor Foundation receive a $10,000 grant.

How does it work?
1. Visit the Minnesota Timberwolves Web site.
2. Scroll down until you see “2010 Grant Voting”
3. Click VOTE NOW; choose Children’s Tumor Foundation and enter the word you see.

Save Money and Give to CTF
You can also help out the Children’s Tumor Foundation with the new pharmacy card program. Get up to 75 percent off the medications you use every day. After your first use of the card, $20 will be donated to the Foundation. For more information about this partnership between the Foundation and Pharmacy Discount Network, please visit www.pharmacydiscountnetwork.com/ctf.

Tune In
*On Monday, April 12th, at 10:00 p.m. EST, MTV True Life will air the episode called “I Have Neurofibromatosis.”  The story will focus on three individuals who have NF: Phil, 16, from Colorado, Bekah, 10, from Illinois, and Amber, 20, from Texas.