So I have an opportunity to join the Mighty 46 Mommas in Washington, DC this April --I AM NOT SHAVING MY HEAD, JUST USING MY WORDS -- to hopefully express the need we have for more research and funding to find better treatments for our children.

As many folks know, my Genna has NF 1, a genetic disorder than predisposes people to tumor growth (among other things). Genna has brain tumors in her optic pathway/hypothalamus, cerebellum, and brainstem. The treatments Genna endured (5 different chemotherapy protocols, shunt placement, surgeries, etc.) are exactly the same as those used in non-NF kids--our friends in the pediatric cancer community. In oncology clinic, there is no differentiation (for the most part) between the NF and non-NF kids when it comes to certain kinds of tumor treatment.

My other daughter also has NF1, and has not required treatment--but there are exciting trials being done with a pediatric cancer drug for exactly the kind of NF tumor she has--I hope we never have to use that for her, but I am so grateful to see where science is going--and I am committed to pushing it along.

So much exciting research is being done--the chemo that has helped G have 4 years of stability was not invented when she first started treatment as a 6 year old. Even her disastrous clinical trial experience helped science along. When G was first diagnosed, I prayed so very, very much for the day that her experiences would be a great story that would encourage people. So many days that story seemed like it would have a very different ending. But G is doing great right now, and as her sister Rosie told me, "mom, you need to do this. It is important." I need to go speak for our friends in the thick of battle--in memory of our friends who we have lost over the last 13 years--and in hope for those children yet to be diagnosed.

If you can help my efforts along at all--I so appreciate it. I know I ask for dollars all the time. If anyone can throw $5 my way, I am so grateful. I am a little scared about driving to DC and acting like I have my sorry self together--but for my kids, I would do anything. Thanks, all.