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 Promising Results in Tumor Shrinkage Study Announced at Neurofibromatosis Conference