MUSC Spine & Brain Tumor Program hosts 2nd Annual Brain Tumor Action Week

April 25th, 2011

The Spine & Brain Tumor Program at the Medical University of South Carolina will host the 2nd Annual Brain Tumor Action Week May 2-7, 2011.

Show your support for patient education programs and research at MUSC by attending one or more activities:

  • Guest Lectures
  • Discussion Panel
  • Brain Tumor Action Fair
  • Brain Tumor Vigil Service
  • Benefit Concert

Brain tumors are devastating to those they affect and their families. Providing patient education is the first step to gaining support and understanding treatment options.

Support research through donations, fundraising or by making a gift so that we can “take a bite” out of brain tumors!

Read the Neurosciences Newsletter: NeuroNews 

View Brain and Spine Tumor Program Clinical Trials.

Patient Advocate Foundation Co-Pay Relief Program

May 25th, 2010

The National Patient Advocate Foundation has an amazing co-pay relief program benefiting not only malignant brain tumors, but 18 other life threatening or chronic diseases. This is a great hidden resource for all of us battling this horrid disease.
This program is set up unlike other programs I have seen before. Each disease has its separate fund and each opens on the first of the month. The fund closes when all the funds have been allocated for that month. The application will open back up again on the first of the following month. The initial application asks a few simple questions to make sure qualify for the fund you are applying for. A paper application will then be mailed to your home for you and your physician to fill out.
I can only speak for how the malignant program runs, but basically it is set up as a reimbursement plan. PAF obtains a 12 month history from your pharmacy and will reimburse you on your out of pocket expenses. Your allotment of money is good for 12 month or until you allotment of funds is depleted.
For more information, or to apply for the program, please visit http://copays.org/

Contact Your Representative to Co-Sponsor The Brain Tumor Awareness Resolution

May 24th, 2010

Representatives Speier, Schakowsky, Sestak, and Castle will be introducing the Brain Tumor Awareness Resolution soon, but they would like to do so with 50 original cosponsors.

During Brain Tumor Action Week, advocates from each state met with their Representatives and asked for original co-sponsors for this resolution.
Now we need your assistance to increase the voice on the Hill to have May declared as Brain Tumor Awareness Month. This will need sponsorship in the Senate for it to become law and we will update you as to its progress.
Please visit http://www.house.gov to locate your Representative’s office, ask to speak to their health legislative assistant and request that they co-sponsor the Resolution.
They can contact The Brain Tumor Awareness Organization for more information at staff@braintumorawareness.org

Brain Tumor Action Week 2010

March 23rd, 2010

Brain Tumor Action Week is May 1-7, 2010 where advocates from across the country meet and discuss with decision makers the issues that brain tumor patients face. Annually, members of The North American Brain Tumor Coalition, a network of nonprofit organizations in the United States and Canada assemble in Washington, DC and invite brain tumor advocates to join them in meeting with their legislators to share their story, present their “asks” and further the momentum to reduce the impact of brain tumors.

The “asks” are  increased research funding and continue the Peer-Reviewed Cancer Research Program at the Department of Defense that supports pediatric brain tumor research.

Register for Brain Tumor Action Week in Washington, DC or set up appointments to meet your legislators in their home offices and visit The North American Brain Tumor Coalition website and download the papers to put in your leave behind packet.

Brain Tumor Action Week events at area cancer centers can include setting up an information table, hosting a brain tumor vigil to remember all those affected by brain tumors and encouraging the donation of hats to join the National or State “Hidden Under Our Hats” display. Check back for more information to be posted here and on our website.

Health Care Reform Passes

March 23rd, 2010

The House voted to pass Health Care Reform last evening making it the most historic reform to have taken place in decades. The focus of Congress on how to reform health care and assure Americans an affordable insurance product, especially those that are uninsured, underinsured or that have been denied coverage due to pre-existing exclusions or age (non-dependent children over age 18 but still in school) has been one of commitment.

Read more about this historic legislation at the White House Blog.

This is What Change Looks Like- Video Announcement by President Obama following the House Vote.

Read details of House Vote, Reconciliation Bill and more at The National Patient Advocate Foundation website.

2010 South Carolina Cancer Report Card

February 26th, 2010

The release of The South Carolina Cancer Report Card shares brain incidence data reflecting the additional registry of benign brain tumors which began in 2006.  This inclusion moves South Carolina to be able to participate in The Central Brain Tumor Registry of the United States, an effort to gather more accurate data regarding brain tumor incidence.

The Central Brain Tumor Registry of the United States, CBTRUS, is a not-for-profit corporation committed to providing a resource for gathering and disseminating current epidemiologic data on all primary brain tumors, benign and malignant, for the purposes of accurately describing their incidence and survival patterns, evaluating diagnosis and treatment, facilitating etiologic studies, establishing awareness of the disease, and ultimately, for the prevention of all brain tumors.

The Bipartisan Meeting on Health Reform

February 25th, 2010

As our decision makers continue to discuss the most important issue concerning American citizens, healthcare reform, we can understand more in depth their individual concerns. Healthcare concerns us all.

This writer encourages you to view the Bipartisan Meeting on Health Reform and learn more about what influences the current costs of healthcare and limited market choices for those suffering from pre-existing, chronic or terminal illnesses.

You can download the hearing for your portable device:
Bipartisan Meeting on Health Reform Pt. 1
Bipartisan Meeting on Health Reform Pt. 2

Bipartisan Meeting on Health Reform Pt. 3
Bipartisan Meeting on Health Reform Pt. 4
Bipartisan Meeting on Health Reform Pt. 5 

As citizens, it is our duty to actively participate in this discussion by understanding the bill, discussing specifics with our decision makers and supporting the efforts of our Representatives as they embrace reform.

America can’t wait for universal and affordable coverage, the elimination of pre-existing condition exclusions, the elimination of annual and lifetime out-of-pocket caps and halt rescission of insurance policies.

To learn how you can get involved, visit The National Patient Advocate Foundation’s website or read their position papers.

BTAO announces new additions to Board of Directors

January 29th, 2010

For Immediate Release-1/15/2010
Media contact: Kate Watson
843-722-0509 (h)
843-469-7515 (c)
 

Brain Tumor Awareness Organization Announces New Board of Directors

Charleston, SC – Monday, Dec.21st  The Brain Tumor Awareness Organization (BTAO) has announced their list of new board members for the year 2009-2010.   The Brain Tumor Awareness Organization was founded in 2006 by Julie Houston, the wife of a seven year grade 3 brain tumor survivor. As patient and caregiver, they defined the needs that most identify upon diagnosis and formed an organization to complement existing brain tumor organizations-all who answer a need in the areas of research, treatment, assistance, advocacy and support. The focus of The Brain Tumor Awareness Organization was to streamline these resources in a comprehensive website so that a brain tumor patient or overwhelmed caregiver could access and digest at their own pace, the available programs and information they offer. This primary focus provides a navigation process for those that visit our site which can save hours, alleviate stress and provide a safety net for those in the crisis phase of the disease.

 

The new and newly appointed BTAO  board members are: 

Mary Lyn Donovan-Non-Profit Executive; Former Executive Director at Susan G. Komen for the Cure SC Mountains to Midlands Affiliate, South Carolina Cancer Alliance Advocacy & Policy Chair. 

Dr. Pierre Giglio – 2006-present Assistant Professor, Department of Neurosciences, Medical University of South Carolina, Charleston, SC 2007-present Medical Director, MUSC Hollings Brain & Spine Tumor Program. 

Jeni Schumacher-Current Owner of RoadWaves Fitness Training Center, Greenville, SC

Former Member and Volunteer Relations Director at the Golden Strip Family YMCA of Simpsonville

Jeni has been with the YMCA for 17 years in several roles. As a mother, wife and business woman she has a strong heart for Cancer as she is a battling melanoma.  Her father died 8 years ago of melanoma that metastasized to brain cancer.  She continues to raise funds for cancer research with local hospitals and assists the Greenville Hospital System in their Philanthropy Department. To date Jeni has raised over $170,000 for scholarships for the YMCA and over $20,000 for cancer research. 

Christy Solesbee- a very successful entrepreneur and currently manages a private investment company. Three years ago her father in law was diagnosed with a brain tumor. She has taken an active role in his care planning. She is excited about the opportunity to serve with the Brain Tumor Awareness Organization. 

Jenni Trouten-  CV ICU Nurse @ St. Francis Hospital, American Association of Critical Care Nurses, State Certified Advanced Life Support Instructor Greenville, SC

Kate Watson-Director of Strategic Communications-Hollings Cancer Center, Charleston, SC; Congressional Chief of Staff, Director of Communications and Press Secretary; Director of Media Relations-American Forest and Paper; and Vice President of Communications and Marketing of American Gas Association. 

Jan Williams- St. Francis Women’s Hospital 1991-95  (Labor,delivery, postpartum (LDRP) Charge Nurse & Preceptor, Management of Same Day Surg, OR, RR), American Cancer Society volunteer chair. 

Remaining members:

Julie Houston- National Patient Advocate Foundation State Policy Liaison, North American Brain Tumor Coalition advocate and member, South Carolina Cancer Alliance Cancer Resource Network Chair, Founder/CEO of The Brain Tumor Awareness Organization; LIVESTRONG Army Leader and former business owner.

Tracy Tankersley- is an events coordinator for the McCall Golf Tournament;  a sponsors liaison and fundraising coordinator.

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The mission of the BTAO is to raise awareness for brain tumors on a local, state and national level through online resources and community for patients, advocates and caregivers and reduce the impact and duration of this disease through interaction.

www.braintumorawareness.org

 

Support a Stamp to benefit Brain Research

January 27th, 2010

In 2002, Keith Houston was diagnosed with a Grade 3 malignant brain tumor at age 36. After receiving treatment, he and his wife Julie took their first trip to Washington, DC to advocate with The North American Brain Tumor Coalition during Brain Tumor Action Week. Julie, a former postal employee began her campaign then for a semi-postal stamp for brain tumors. She began by contacting an internationally renowned artist, George Pocheptsov to design the stamp. George, who lost his father to a brain tumor when he was only a toddler, has donated his paintings to benefit charities over the years. Though George’s art is highly detailed and he may not be selected to design such a stamp, he is the Brain Tumor Awareness Organization Ambassador and supports the mission and programs through his paintings.

Since the Citizen’s Stamp Advisory Committee had previously nominated for consideration a Silver Ribbon Stamp proposed by the Silver Ribbon Coalition, which represents all brain diseases, disorders and injuries, there was an opportunity for collaboration to bring both the brain tumor community and the Silver Ribbon Coalition together as one voice. The Breast Cancer Research Stamp had generated $52 million in 9 years and greatly increased research funding at the National Institutes of Health (NIH), The National Cancer Institute (NCI) and The Department of Defense (DOD). Julie approached members at each one of these institutes to learn how multiple research projects were benefiting various brain disorders, dysfunctions, diseases and injuries. Upon identifying the advances in these areas of research and the impact that traumatic brain injuries are having on our Veterans at war, she recognized that the numbers were significant to lobby The Citizens’ Stamp Advisory Committee (CSAC)  and Congress for a semi-postal stamp, supported by all brain organizations.

A recent conference revealed that the success of the Breast Cancer Research Stamp was a direct result of the numbers of supporters, the organized campaign, the purchasing power and the increased awareness about the significant funding the stamp provided. It is recognized by the CSAC that to issue a stamp, it must be supported by such a grassroots effort.

Therefore, we are asking that you support the campaign for a semi-postal stamp to benefit brain research and invite anyone you know in support of this effort to sign a petition or send a letter to the CSAC.

Together, we can be heard.

My special thanks to all those individuals and organizations that provided their 800 signatures in 2004 and especially to the Silver Ribbon Coalition, who pioneered this effort early on. Thanks to their impact, this stamp can become a reality with all efforts coming together for one cause.

Click here to learn more and submit your letter.

Begin in 2010..Putting the pieces together

January 27th, 2010

Many issues continue into a new year but as it begins, it is a time to assess your overall health-physical, emotional, spiritual and financial. To assist with this, we created a financial planning tips sheet . This first set of discussion sheets in the series addresses basic management skills:

  • Sorting and organizing your mail
  • Setting up an electronic filing system
  • Accessing computer program tutorials
  • Employing an erasable china marker for easy labeling of items
  • Filing for Homestead Exemption to reduce property tax liability
  • Filing your taxes-getting assistance from a United Way Agency or through www.irs.gov
  • 2010 Medicare Advantage open enrollment period and criteria
  • Self-advocacy tools available on our website

Some simple organization steps can result in supportive measures that reduce stress and provide clear communications about the processes you are engaged in.