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Advocacy: One Person at a Time
Posted by:
LaurenR at NBTS on
May 5, 2011 at
12:16PM UEDT
Lanette was diagnosed with an anaplastic oligodendroglioma in 1998. She
is the mother of two and resides in Arizona. She never returned to work
in the banking industry after her tumor diagnosis, and started the Gray Matters Foundation in 2007. Their mission is to support and empower
people impacted by brain tumors through outreach, awareness, and
assistance programs, and to develop and participate in public awareness
and education programs about brain cancer.
What does advocacy mean to you?
Advocacy means that I care about each special person facing a brain tumor and I want to help them individually. If one person is touched then I have done my part that day. I want to help. Advocacy to me is sharing support NOT statistics.
What happens at Brain Tumor Action Week?
I attended BTAW in 2000 and 2002. I lobbied Congress and was able to share my story with the members of Congress. I also participated in Brain Tumor Coalition meetings, Brain Trust Support Groups & Hidden under our hat presentations at the fountain near the Capital.
Locally, when my son was in grade school he went around school and the neighborhood to get a petition signed to take to DC and ask Congress for better support services. The media picked up the story and I have been interviewed on several of the local TV stations about the cause and it’s need for awareness.
National and local activities may differ, but bottom line it is about AWARENESS. Bringing awareness to those around you about this DISEASE opens the door for education. Education creates action. ACTION will bring us the cure faster.
How many years been involved with the brain tumor cause?
This September, I will celebrate 13 years since my diagnosis and surgery. Learning about organizations such as NBTS, allowed me to connect with others and create life-long friendships. These friends have helped lead me into advocacy.
What brings you hope in the brain tumor advocacy world?
I am hopeful that we continue to make positive advancements towards a cure. I smile when I think back at how far we have come in the last 19 years since my grandma died from her brain tumor. I never dreamed way back then that I would be diagnosed and survive the disease. Today we have chemo by pill and so much more. As far as medical advancement is concerned I am most hopeful when I attend NBTS one day conferences and see the research projects and the work is being funded. The passion behind those who are researching a cure is amazing. I have to believe we will find a cure in my life time.
I am always hopeful when I am helping because it means I am alive.
What three words describe your brain tumor journey?
Tragedy into TRIUMPH
(4) Comments
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Posted by: Anonymous on May 5, 2011 5:34PM UEDT
I know Lanette Veres, she is my dearest girlfriend. She is more than wonderful. You cannot imagine what a blessing she is until you meet her and realize all she does for those in need.
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Wishing there were some activities for Brain Cancer where we live.
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I live in Washington DC. I am in a position to help with advocacy and am very motivated. Please contact me at katiecogan@yahoo.com if I can help.
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@Anonymous Thank you for the kind words.
@Grandmomof7
Where do you live? contact me directly on my email graymatttersfoundation@gmail.com and we can see if there is something in your area or we can get something started. This is what I do so let's talk would love to BRAIN STORM , I am sure we can connect you with someone who feels the same.
@Kathleen Cogan I will send you an email. You are in the perfect area to be motivated. Lot's of activities to get involved in.
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