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!
All Day Raffles! Bake Sale by Reggie Bibbs Art Cars Just Ask t-shirts Houston Roller Derby skaters Astros ticket raffles! Maybe a food truck!
All proceeds benefit the Just Ask Foundations and the Just Ask World Tour!
Hands down, dive bars are our favorite joints to hang out in and Poison Girl in Houston is no slouch when it comes to providing good, clean dive bar fun. There’s a few pinball machines, cheap, heavy drinks, a hip cast of urban bohemians bellied up to the bar and a killer jukebox—this one being heavily, okay totally, steeped in all music Texas, from country to punk, rockabilly, indie and some hip-hop. Poison Girl brings to the Houston bar scene exactly what it seemed to be so lacking in, a dive bar that knows it’s a dive bar and doesn’t want to be anything more than that. A portion of all Poison Girl proceeds of July 12, 2015 will benefit the Just Ask Foundation, a 501 (c)(3) dedicated to raising awareness of neurofibromatosis.
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 →
Caught it in the nick of time…mechanic told me I was running on air!!! Damn! If it’s not one thing, it’s another. Pretty soon we’ll probably have to start thinking about flushing the oil and rotating the battery.
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.