Book Summary

Book Summary ** Our lives, after the diagnosis and subsequent treatment, of my husband for a brain tumor, clearly have taken a path less traveled. Yet our journey has and continues to be, a journey of hope, joy and of unyeilding commitment. We invite you into our lives, a view of our childhood, marriage, a marriage seperate from convention, yet strongly bound. Join us as we recall the last twenty-five years, twenty of which have been spent LIVING with a brain tumor. Come, witness our challenges and discover our triumphs as we reinvent our relationship, struggle to redefine marriage roles, communication styles, and reclaim intimacy after illness.

Wednesday, October 17, 2012

National Brain Tumor Society Summit 2012 and Brain Tumor Walk

A few months ago we were asked if we would come to Boston for training as an state lead advocates for NBTS.  This would be followed by the NBTS Summit 2012 and the Boston Brain Tumor Walk.  We had done training in May for Head to the Hill in DC and this state lead advocacy training would be for 12 participants as part as a more formal position.  I was honored to be asked so certainly said yes.  Boston is close to family and friends and when we made flight plans extended our trip to take in a visit. 
We arrived on Thursday and found our way to the Omni Parker House Hotel in the heart of Boston.  Training started at 3pm and outlined what our role as policy advocates would be over the next 2 years.  Our first task is to recruit others to sign up to be an advocate and take action by submitting e-mails to congress.  The agreed goal is to find 1000 advocates by the end of the year.  The eager group started formulating plans to contact others to reach this milestone of 10,000 in total. 

To reach out to others and ask for this small favor seemed simple enough. We proceeded to write out our 1 minute elevator speech.  My passion for this cause made me jump at the chance to practice this in front of our small group.  Taking that opportunity ensured to me I have the confidence to do this.  As Ron's spouse, caregiver, friend, advocate, and companion I am his voice and need to speak to others on behalf of him and all the others who can't.  I feel guilty that I waited so long to get involved when here are others who have become advocates in memory of their son's, daughters, mothers and fathers.  A few of the members are survivors.  We as a group will recruit other advocates like you who share in our passion.  The summit portion started with the annual dinner while the community awards and research grants recipients were recognized.  Again these folks made my contributions pale in comparison to their fundraising, awareness efforts and dedication to the NBTS.  The education sessions on Friday outlined the research efforts that have been accomplished and the ambitious efforts yet to be coordinated.  Having this knowledge and motivation carried me through to Saturday as we found our way to south Boston for the Brain Tumor Walk. 

We were surrounded by 3000 of the most generous folks.  Many walk in memory of loved ones holding signs or wearing t-shirts with pitures or their team logo.  As I stood there in awe I was struck by the numbers of people obviously having the passion I have for raising awareness.  What a better group than this to start my efforts of recruiting advocates.  I grabbed a handful of cards and started my mission of getting folks to sign up to be advocates and having their voices and stories heard by congress.  The response was enthusiastic and passionate.  I provided my elevator speech over and over again but with each group I approach I took a few minutes to hear why the group was walking.  The stories were both heartbreaking and heartwarming.  I am forever humbled and this experience will help me maintain my motivation.
Can I ask each of you to take 2 minutes and sign up to be an advocate. Click on this link, complete your info and then click the button "Take Action Now" and it will step you through the process of sending an e-mail to your members of congress. Please join me and have your voices heard. Together we will get the support we need to fight brain tumors.