Senator Ted Kennedy

My heart just broke as I heard the news that Senator Ted Kennedy was diagnosed with a malignant giloma brain tumor.  So many of us have heard those words “You have a brain tumor.”  This does not affect just Senator Kennedy, but his whole family. 

I am sure he will be provided with the best in the medical field.  But there are still no answers for the questions of “Why” or “How”.

The interesting thing about Brain Tumors is that they have no socio-economic boundaries and do not discriminate among gender or ethnicity. 

We just traveled to Washington, DC at the first of this month for Brain Tumor Action Week.  One of the things we were advocating for was for May to be established as National Brain Tumor Awareness Month.  I am sure that the House and Senate are now listening.  This has hit too close to home when it hit on Capitol Hill with Senator Ted Kennedy.

There is a Resolution in the House for the above bill;  Senators, in honor of Senator Ted Kennedy and all the rest of us Brain Tumor Survivors, we need a bill in the senate.

How did the news of Senator Ted Kennedy affect you?  Do you think it will help bring to the fore front Brain Tumor Awareness and help the cause?

HOPE With Support Newsletter

This Month of Brain Tumor Awareness has been an exciting month.  We traveled to Washington, DC with hats for the Hidden Under Our Hat project, we visited Capitol Hill to share our thoughts on some pending bills, we met old friends and made new friends at the NBTC advocacy training, the vigil and the Reading of the Names.   We shared stories, cried tears, and made memories.

Now, HOPE With Support has sent out their first Newsletter, which will be published monthly.  If you did not receive one, it is because you are not on our email list.  Join us on our mailing list (on web site) and we will send you our newsletter.  Stay in touch with what HOPE With Support is doing to promote Brain Tumor Awareness and Support for this disease.  Order our HOPE BT Awareness pins to share with family, friends, and support group meetings.

We can make a difference! 

“SEEDS of HOPE”

Sandra

Washington, DC – Brain Tumor Action Week

We just returned from Washington, DC and the excitement of Brain Tumor Action Week.  The 5k Race for HOPE on Saturday was awesome!  There are pictures in our photo gallery of the race.  You could not help to be in awe as you see these thousands of people coming together to raise money for Brain Tumor Awareness and for research.

On Monday we met with the North American Brain Tumor Coalition for Advocacy Training and preparation to go to the Hlil on Tuesday.  We spent a day in training and learning more about BT’s and the bills in Congress that we were going to bring to the attention of our Senators and Representatives. You had that awesome feeling of “Getting Involved” and for a good cause.

Monday night we met at the Upper Senate Fountain for the Vigil and Reading of the Names.  Over 1000 names were read including survivors and angels.  We also walked around the Senate Fountain and viewed the “Hidden Under Our Hat Project”.  Over 2500 hats represented both survivors and angels.  Each of the Hats from the festival in Salisbury, Maryland were added to the Hidden Under Our Hat project.  As each hat was placed a picture was taken.  These hats were placed with love and remembrance of each of the people who placed them in honor or memory of a loved one in Salisbury.

Tuesday we headed to Capitol Hill.  We had the opportunity to meet with Legislative health aides of our Maryland Senators.  They were very gracious and listened  as we shared, presented information, and asked for support on issues affecting the brain tumor community.

Next year, think about joining us in Washington, D.C. for Brain Tumor Action Week.  You can make a difference! 

HIDDEN UNDER OUR HATS A SUCCESS!

We had a successful “Hidden Under Our Hats” at the Salisbury Festival on April 26th.  We were honored with two speakers, Honorable Mayor Barrie Tilghman of Salisbury, MD and Honorable Mayor Thomas Cardinale of Berlin, MD.  Both Mayors presented proclamations for May 1st – Brain Tumor Awareness Day.  We had a wonderful program including the placing of the hats.  It was a very emotional and moving experience.  The participants were given daisies after placing the hats.  This was the first of many events planned  by HOPE With Support for the Eastern Shore of Maryland for Brain Tumor Awareness!

What is your group doing for Brain Tumor Action Week?  Share with us!

VIGIL and READING OF THE NAMES

You would not believe my email for the Reading of the Names.  I have had almost 400 emails with listing of names to be read at the Vigil and Reading of the Names in Washington, D.C. on Monday, May 5, 2008.  Right now I am doing good just to list the names on the vigil list, a quick response to the sender, and post on the web site.  But I sit here in tears as I read your stories.  So many have endured such pain and Brain Tumor Awareness came to them like it did to me, “You Have a Brain Tumor”. 

For those who have lost a family member, friend, or a child, my heart breaks with every email I read.  The children are the hardest because I think “This is not the way it is supposed to be.  No parent should have to bury their child”.  Especially when some of them were so young.  I have sat with tears rolling down my face trying to place names on the Vigil list and web site and wiping away tears.

We have already over 425 names.  I have made a scroll out of these names which we are going to roll out at the festival tomorrow in Salisbury, Maryland where HOPE With Support will be having a local “Hidden Under Our Hats” and collecting hats to take to Washington to add to the National Brain Tumor Awareness Project sponsored by the Brain Tumor Action Network.

Continue to send in names.  One day I will try to personally write all of you and let you know how deeply you have affected my life and increased (if possible) my passion for sharing Brain Tumor Awareness with the world.

God Bless,

Sandra, Survivor

Vigil – Reading of the Names in Washington, D.C.

When I first discovered I had brain tumors, I attended the Vigil and Reading of the Names in Washington, D.C. during Brain Tumor Action Week.  I was overwhelmed as they read the names of survivors and “angels” that had brain tumors.  How had I become part of the club?  This group that I never intended to be part of…and now they were reading my name.  Sandra Wyatt – survivor. 

This was only the beginning of my battle.  I learned this during the next 5 years as my battle really began.  Not just a battle with brain tumors, but a battle with society, with family, with friends and with survival.  I was a part of this club, helping to fight for my own survival. Fighting for Brain Tumor Awareness and Support for Survivors, their families, caregivers and the angels that have died fighting this disease.

Send in your name, or the name of a friend or angel to be read at the Vigil – Reading of the Names in Washington, D.C. on Monday, May 5th – 2008!  Brain Tumor Awareness & Support. 

May 1st – Brain Tumor Awareness Day

HOPE With Support has written letters to Mayors, Town officials and Towns across the Eastern Shore requesting Proclamations for May 1st to be Brain Tumor Awareness Day.  We are proud to announce that at the time of this posting we have received seven Proclamations. 

What can you do to help promote Brain Tumor Awareness?

1.  Promote it on your sign outside your building where others can see it.

2.  Have a casual day on May 1st and donate proceeds to HOPE With Support so we can help others.

3.  Recognize others who have been down this path and give them our web site and number.

4.  Have your own promotion and let us know so we can mention it on our web site.

5.  Volunteer to help us get the word out.

Thank you Delmarva for all your support!

 

“Hidden Under Our Hats”

I am so excited about sponsoring “Hidden Under Our Hats” at the Salisbury Festival.  We will be sponsoring the project for the Brain Tumor Action Network on the plaza during the festival on April 26th.  This is a National Brain Tumor Awareness Project.  The picture of the hats on the home page of the web site was taken last year during Brain Tumor Action Week in Washington, D.C.  You can not imagine the emotions when you see these thousands of hats surrounding the Senate Fountain during the program. Please spread the word on the Delmarva Peninsula and bring your hats.  I want to bring Brain Tumor Awareness to the peninsula.  We will take these hats to Washington, D.C. for Brain Tumor Action Week the first week of May.  I promise to document with pictures as we add our hats from the shore to this awesome project

5 Year Anniversary as a BT Survivor

Yesterday, December 3, 2007 was my 5 year Anniversary as a Brain Tumor Survivor.  Every year is something to celebrate, but somehow a 5 year mark is a real celebration!!  Do you know according to the Central Brain Tumor Registry that more women die of meningioma tumors at 5 years than of breast cancer.  WOW!  I salute all the women who have fought the battle with breast cancer and all the Awareness for this disease.  Now Delmarva, let’s wake up and be aware of Brain Tumors and the devastation they can cause and how they change peoples Quality of Life.  Let’s make a difference as our “sisters” with breast cancer have done!!!!

HOPE With Support Reaches Out To Delmarva

It has been truly an awesome day!  WBOC 16, and Hallie Jackson, ran a news story on HOPE With Support and my story with Brain Tumors.  I have heard via email and phone from Brain Tumor Survivors, Caregivers, and Parents of Angels from all over Delmarva.  How awesome that we are going to be able to come together and to share our stories, our thoughts, our knowledge, and our support for each other.  My path had been long and lonely, but as we come together and “WAKE UP” Delmarva to Brain Tumor Awareness and Support, the path is becoming clearer.  Together we can make a difference!  If you have not written or shared your story, please do so on our website and keep writing.

 ”Seeds of HOPE” from Sandra