While its been said I'll never see a drug for NF2 in my lifetime - it's always the fortunate next generation who'll benefit - I'm here to say I'm 38 years old with 7 major surgeries under
my belt which all resulted in devastating losses that make life harder than needs to be. Yet fortune enough to still walk, talk, see and have a zest for living and I'm on a drug trial, along with two others, thanks to a compassionate and forward thinking doctor. Despite the obvious need of drug therapy, it would have been near impossible to be in the trial had I not had 1) insurance 2) time to commit 3) income. Insurance, time, and money sums up the cold hard facts. Thankfully my insurance has approved everything. Thankfully my job with the State of FL is secure and has a sick leave pool. There is never enough money, but somehow through budgeting and small donations I am surviving. This trial requires monthly visits to MDA so airfare, lodging, transportation expenses are in the thousands after 10 months. It is worth every cent.We don't know if inhibiting ras and therefore rac is the magic bullet for NF2 but it's a smart target to start with. The one thing great about being in a drug trial is instead of debilitating fear of MRI's, or rather the results, like
the positive affirmations that line the walls at MDA, there is a feeling of hope and this is vital to anyones well being. I've watched as dozens of friends and acquaintances die slow miserable deaths at young ages from this cruel disease that deserves full attention to stop these tumors that mangle our nerves. 
This FTS drug trial has given me a new type of hope, not the standard "we hope you won't become deaf, blind, or paralyzed from this surgery," but a true hope that maybe tumors I have will stop growing and new ones won't begin. There are drugs available NOW and more in the omnipresent pipeline that should be tested on NF2 (and NF1). Drugs that have potential to stop the madness for THIS generation as well as the next.
