The NINDS supports clinical research aimed at understanding the natural history of tumors in NF2 and determining possible factors that may regulate their growth patterns. Using diagnostic imaging, eye examinations, hearing and balance tests, neurologic examinations, blood and genetic testing, and quality of life assessements, researchers hope to better characterize the impact of NF2 on individuals and look for possible factors that may affect disease progression.
The NINDS is supporting ongoing research with a large group of children with NF1 to find associations between brain abnormalities and specific cognitive disabilities. Finding these links would give doctors an indication of the kinds of learning disabilities parents and their children could anticipate and help them develop early intervention programs.
Current basic and clinical research is aimed at understanding how the genetic mutations that cause the benign tumors of NF1 also cause neurons and neural networks to form abnormally during fetal development, which later result in the learning disabilities and cognitive deficits of children with the disorder. The NINDS also encourages research to develop improved methods to diagnose the neurofibromatoses and identify factors that contribute to the wide variations of symptoms and severity of the disorders.
Ongoing NINDS-sponsored research continues to discover additional genes that appear to play a role in NF-related tumor suppression or growth. Continuing research on these genes and their proteins is beginning to reveal how this novel family of growth regulators controls tumors formation and growth. Understanding the molecular pathways and mechanisms that govern these key proteins and their activities will offer scientists exciting opportunities to design drugs that could replace the missing proteins in people who have the neurofibromatoses, and return their cell production to normal.
In the mid-1990s, research supported by the NINDS located the exact position of the NF1 gene on chromosome 17. The gene has been cloned and its structure continues to be analyzed. The NF1 gene makes a large and complex protein called neurofibromin, which is primarily active in nervous system cells as a regulator of cell division and functions as a kind of molecular brake to keep cells from over-multiplying. In addition to work on NF1, intensive efforts have led to the identification of the NF2 gene on chromosome 22. As in NF1, the NF2 gene product is a tumor-suppressor protein (called merlin or schwannomin).
The National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), is the primary federal supporter of research on neurological diseases. The Institute sponsors basic studies aimed at understanding normal and abnormal development of the brain and nervous system, as well as clinical trials to improve the diagnosis and treatment of neurological disorders. In conjunction with the other NIH institutes, the NINDS supports research focused on finding better ways to prevent, treat, and ultimately cure the neurofibromatoses.
The Just Ask Foundation is currently in the process of planning a 2014 nationwide awareness campaign for neurofibromatosis.
Our multi-targeted campaign will consist of speaking engagements in cities with NF Chapters, television appearances (locally and nationally), ad campaigns, fundraisers, road trips in the Just Ask Mobile, a social media team and, well, you get the picture.
Wow! Those Are Some Really Big Plans!
You are correct. But if we want big results, we need to start with a big plan. Will we accomplish everything on the plan? Maybe. Maybe not, but until we try, we’ll never know.
But, in our mind, if we can make a difference in one person’s life, we will have succeeded. Big time!
Sure, tons of them, but this one pretty much says it all.
Earlier this year, we received a note from a young college student in Canada who had recently been diagnosed with NF.
She had met Reggie a few years before at an NF symposium in Calgary and very much wanted to see him again. She wrote the following letter to the Just Ask Foundation:
“It would mean the world to me if Reggie Bibbs would be able to attend the NF conference in Vancouver in October. Reggie is my inspiration, and I know you probably hear that a lot. But my story would be a whole lot different if I didn’t have the opportunity to meet Reggie a few years ago.
“I Was Ashamed for Having NF.”
She continued… “It has NOT been an easy journey for me. I’ve suffered from serious depression and a serious eating disorder, just because I was ashamed of who I was. I was ashamed for having NF, and I was embarrassed to tell people about my medical condition.
All I wanted was to be normal, but to be normal I needed to shut out pretty much everyone from my life and live behind a curtain of fake emotions and fake stories. It wasn’t until I met and heard Reggie speak that I felt comfortable enough to come clean, and to finally accept myself for who I am.
Without Reggie, I don’t even know if I would be here today.”
Funny you should mention that!
It’s going to take a little money. Not a fortune but certainly more than what we have in the bank right now which is about $514.
Up until now, we have depended on the sale of Just Ask! t-shirts and a few donations here and there to make ends meet. Well, quite frankly, to accomplish our goals for 2014, it will require a lot more than a few hundred dollars.
Our Fundraising Goal is $120,000.
Wow, that’s pretty aggressive. Yes, it is, but so are our goals!
Our plan is to target one major city a month via the “Just Ask! Mobile” for 12 months.
That’s $10,000 per month for two people to travel cross country raising awareness of neurofibromatosis. Speaking to NF groups. Appearing on radio programs, talk shows…who knows, maybe even The Ellen DeGeneres Show.
The point is we’re going to be working our butts off raising awareness of NF at every stop and every mile marker on the road. At every truck shop, motel, restaurant and rest stop across the country.
Click on this link and donate as much as you can afford. That’s it. You provide the tools. We’ll do the heavy lifting.
Of course, the Just Ask Foundation is a 501(c)(3) so all donations are tax deductible!
Plus, we will be posting on Facebook, Twitter, Flickr, Vimeo, You Tube and every other social media network we can access to keep you informed of our travels and adventures.
We Are Thankful for Your Help!
As you come together with your loved ones, this holiday season, please remember all of our NF brothers and sisters who may not be as fortunate. Any money we receive will be used to make life easier and enjoyable for all of us challenged by NF.
Phase II of the Just Ask Foundation Mission is about to take place. Reggie will begin traveling the city of Houston, the State of Texas, and the United States to raise awareness of neurofibromatosis.
But before he travels a mile, there is one thing that he desperately needs: the means to get there.
He needs a car. An SUV to be more specific.
We are asking for help in raising funds to purchase a used SUV that we can use to be able to attend more functions.
Help Reggie and Just Ask get a Car to Spread the Word About NF
Other Ways You Can Help
Thank you for your interest in helping raise awareness for NF. With your help, I hope to spread the word about neurofibromatosis through web, viral, web-related resources, and personal appearances at events throughout the country
Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.
I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine. Continue reading