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. 

survivors
 
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.
http://www.braintumor.org/get-involved/advocacy-public-policy/

3 comments:

  1. Hey! You have such an interesting and informative page. I will be looking forward to visit your page again and for your other posts as well. Thank you for sharing your thoughts about brain tumor support groups. I am glad to stop by your site and know more about brain tumor support group in your area. Keep it up! This is a good read.
    The symptoms are true for ALL types of neoplasm of the brain (including secondary tumors). It is common that a person carry a primary benign neoplasm for several years and have no visible symptoms at all. Many present some vague and intermittent symptoms like headaches and occasional vomiting or weariness, which can be easily mistaken for gastritis or gastroenteritis. It might seem strange that despite having a mass in his skull exercising pressure on the brain the patient feels no pain, but as anyone who has suffered a concussion can attest, pain is felt on the outside of the skull and not in the brain itself. The brain has no nerve sensors in the meninges (outer surface) with which to feel or transmit pain to the brain's pain center; it cannot signal pain without a sensory input. That is why secondary symptoms like those described above should alert doctors to the possible diagnosis of a neoplasm of the brain.
    Please feel free to suggest other resources that we should consider adding to this list by contacting brain tumor support groups

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  2. Hello! Thank you for sharing your thoughts about brain tumor research. I am glad to stop by your site and know more about brain tumor research. Keep it up! This is a good read. I will be looking forward to visit your page again and for your other posts as well.
    Headache in person under 6 years old may be a possible cause of either brain tumor or hydrocephalus.
    We have sponsored several programs at the Brigham and Women’s Hospital designed to expand the number of investigators in the field by supporting researchers in the early stages of their careers as well as seasoned researchers who are working on translational research and/or novel, scientific approaches for which securing funding is often challenging.

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  3. Traumatic Brain Injury is hot topic in all the brain conferences in the world. It is because the brain injury issues are increasing at an alarming rate and very rapidly. So it is very good step to aware people through such conferences. traumatic brain injury

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