Monday, December 22, 2008

For our NF friends who are struggling...

My holiday wish this year is that all those suffering from health difficulties have triumph over their struggles.  I think I have become slightly numb to the mounting numbers of those around me who are suffering.  NF has done this.  We learn to filter out the less dire in order to pay attention to those truly in need.  I know young men who are much too young to be battling cancer.  I know children having their first surgeries with a second one already on their calendars.  Each family drowning in their fears, needs, and frustration with NF research.  My daughter is healthy, or as healthy as they come with NF at 5 yr. old.  But I am not ignorant.  I know each day we have with no complications is a blessing.  But even a prognosis of scoliosis would not rattle us now.  It would be more inconvenient than heartbreaking.  I am troubled by the growing numbers of folks with NF that I know who are facing more challenging situations.  Research can not happen fast enough.  I add to my prayers that the Gov't continues to support their funding for NF research and that the new administration sees fit to give us more money, not less.  I along with NF Inc. have spent 2 1/2 yrs. collecting folks to be more proactive in raising awareness and money.  As our economy suffers through its own disease we need to still fight for the future of NF.  Our battles even harder as our neighbors may be facing challenges of their own to put food on the table.   But then we ask for $5 instead of $50 to help us in our mission.  Did you know that 115 babies are born each day with NF?  Staggering.  I am grateful this year for good friends like Jodi Harrington and Jessica Stone who have made raising awareness a similar passion.  I love them both.  They are gifts to NF.  I hope this year Run4NF.org grows in order to continue funding research, education, NF camp, and all the service NF Inc. provides to give hope to the future and help provide a livable today.  God Bless.