Was out of town for a week so took Reggie Bibbs and his nephew, Kory, who also has NF, to our favorite restaurant in Houston, Saltgrass Steakhouse in Meyerland Plaza. Brooke, our wonderful waitress was charming, super attentive and perfect in every way. Thank you, Saltgrass, for always going above and beyond for all of your diners! We’ll be back!!!
Only $315 to go! I honestly don’t want to cut my beard but if it raises money and attention for Neurofibromatosis awareness, I’m all for it….for the right price, that is! $500 is all it will take to see my face bare-ass naked! Five people have already ponied up. How about the rest of you? For an additional $1,000, I will shave my head. That is definitely something I do not want to do! Go to
http://www.gofundme.com/justaskworldtour to make a difference!
Thank you, Kathryn Tyler and Poison Girl for hosting our first ever Just Ask Fundraiser! Thank you to everyone who showed up and those who chose to donate via our gofundme account instead. A Grand Total of $1,500 was raised which will cover most of the expenses of our next world tour stop as soon as Reggie is up for the travel.
Thank you, again, everyone for a great afternoon at Poison Girl and a great opportunity to raise awareness of Neurofibromatosis to a new audience!
Over half of patients treated with selumetinib in phase I trial see reduction in plexiform neurofibromas.
As hundreds of the world’s leading NF experts convene in Monterey, California for the Children’s Tumor Foundation NF Conference, the largest gathering dedicated to neurofibromatosis (NF), it was announced today that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1”, Brigitte C. Widemann, MD, of the National Cancer Institute (NCI), reported that response data in a phase I trial for children an Continue reading
ABOUT NEUROFIBROMATOSIS (NF):*
• Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.
• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.
• NF occurs in one in every 3,000 people and affects millions worldwide.
• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.
• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.
• NF has three distinct forms, NF1, NF2, and schwannomatosis.
• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.
• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.
* Above information was provided by the Children’s Tumor Foundation (CTF.org)
The Just Ask Tour traveled over 1,300 miles – from Houston, TX to Scottsdale, AZ – to attend the annual CTF NF Forum! Over mountains, through deserts, eating more fast food than we’ve ever eaten in our life, Reggie and I made it and lived to talk about it.
It’s been non-stop meetings and presentations packed with news on the latest clinical trials for Neurofibromatosis patients, the latest research and the latest facts about this disorder that affects 1 in 3,000 people!
I’ll write more after the conference is over but this is what the CTF website had to say:
April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States.
The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis.
The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!
The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.
Please know that it wasn’t easy getting to this stage of the Just Ask World Tour. It took a lot of time, sweat and money to make this happen.
Reggie and I were happy to take care of the time and sweat and a lot of the money involved with raising awareness of neurofibromatosis.
But now, unfortunately we are falling short on the money part that will take us through the tour.
The $15,000 we have raised so far has helped to get the Just Ask bus in condition to travel the country. We have a motor we kind of trust, the exterior wrap is finished and looks great thanks to some special help from Matt Cline and Bayou Graphics, and a very functional but yet cool looking interior from the Upholstery Shop.
Now, quite honestly, we need to build up the GoFundMe account so that we can actually travel with the bus.
This upcoming trip to attend the CTF Forum in Scottsdale, Arizona has more than tapped us out on our expense account. Fo us to continue and post a schedule, we will need to raise some money, not a lot, but enough to get us to a few more locations.
We really want to be able to make it to Canada and see all of our friends in Vancouver, Calgary, Manitoba and, yes, Red Deer.
Any help you can provide, no matter how small will go a long way for Just Ask to fulfill it’s mission — to make life easier to all with neurofibromatosis by raising awareness, understanding and compassion for those challenged by it.
I can’t think of a better ambassador for NF patients than Reggie Bibbs.
He is doing extraordinary things way beyond even his comfort level to make it easier for the next NF patient to live life a little easier.
If you are unable to donate, and we totally understand, at least share this page with your friends in the event they would like to help.
I think we owe Reggie our unending love and affection but also the funds to help him do what he was born to do.
Please click below. Thanks you!