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.

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

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.

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.

Christmas Eve brought sweeping reform in the Senate when 60 votes were cast to pass legislation to provide health care coverage for Americans.
Now that the Holidays have passed, the House and the Senate will conference on the legislation and continue the hard work.
To learn more about where this effort is currently, visit The National Patient Advocate Foundation’s website.

Visit THOMAS.GOV to learn about recent action on:
H.R. 3590-The Patient Protection and Affordable Care Act
H.R. 3962-Affordable Health Care for America Act

Well we are back from the bicycle ride to Austin Texas with the Palmetto Peloton’s Challenge to Conquer Cancer team. I once again went as their Medic.
As a team we have raised over $200,000.00 for cancer research both here locally and for the Lance Armstrong Foundation.

The ride is a relay from Greenville SC. To Austin Tx. In which there are teams that ride 24 hours a day until we get to Austin where we all participate in the LIVESTRONG Challenge.

Convoy to Austin

This is a fantastic and heartwarming experience, it is incredible to see and be with all the people whose lives have been affected by this horrible and life-altering disease.

Our C3 Warriors

The best part for me is to not only see Lance but to see the changes in people’s lives as they are forever touched by what they see and the stories they hear. I know for me how great it felt to hear people encouraging me as I rode with them or more like when they passed me and at one point even help push me up a long hill, it is a feeling that will be with me forever, and yes it is kind of cool to see Lance.

The C3 Survivors finshing the 5K

Help us support the effort for The International Brain Tumour Alliance’s “Walk Around The World” by downloading an awareness bib and donning it for a walk. You can download our bibs to pin on your shirts at Advocates’ Corner

Click on Home>Documents>Awareness Bibs
Go to our Walk Form to log your miles.

You will need to create an account to log in to use these tools.
Organize a walk in your neighborhood…raise funds for the BTAO by starting your own fundraising page at Firstgiving

Support our Mission…Raise Awareness!

(L-R) Jan Williams-12 yr. Survivor; Julie Houston-President (BTAO); Christine (Patient Educator); Rachel Beard (Admin. Asst.) Dr. Pierre Giglio (Neuro-Oncologist) of MUSC-Hollings Neuroscience Department

600 patient backpacks full of resources were delivered to 3 Charleston Area Cancer Centers-MUSC-Hollings; Roper-St. Francis and Trident. These backpacks bear The Brain Tumor Awareness Organization logo and are full of valuable resources to assist patients immediately upon diagnosis.

The backpacks contain materials from:

•  Genentech
•  Schering-Plough
•  The American Brain Tumor Association
•  The National Brain Tumor Society
•  The Patient Advocate Foundation
•  The Healing Exchange B.R.A.I.N. Trust
• Caring Bridge
• Journey Forward.org
• The Lance Armstrong Foundation
• The National Coalition for Cancer Survivorship
• The Brain Tumor Awareness Organization Resource Booklet

This project was made possible through funding provided by The Zucker Ride for Hope in Charleston, SC. The next ride event is October 25, 2009 To participate visit Zucker Ride For Hope

(L-R) Jan Williams-12 yr. Survivor, Julie Houston-President (BTAO), Laurie Lybrand (Cyberknife Coordinator) Kelly Weeks (ACS Patient Navigator) Roper-St. Francis Radiation Oncology Dept(L-R) Jan Williams-12 yr. Survivor, Julie Houston-President (BTAO) Anne (Support Group Facilitator) Michell Horton (Neuro-Oncology Manager) at Trident Cancer Center

 

(L-R) Jan Williams-12 yr. Survivor, Julie Houston-President (BTAO) Anne (Support Group Facilitator) Michell Horton (Neuro-Oncology Manager) at Trident Cancer Center

 The Brain Tumor Awareness Organization would like to thank all the partners in this project who saw the need for brain tumor patients to have credible resources and access to various assistance programs-delivered to them in a backpack by a Neuro-professional.
With so much information available, it was our goal to connect them directly with those resource partners that could navigate them through their journey with self-advocacy tools, survivorship plans, one-on-one support, financial assistance and more. In addition to these resources, we have provided some simple worksheets to assist patients and their families through various tasks such as budgeting, creating a support network and managing correspondences. These worksheets can be downloaded from our website on our Support page.

Organizing the Assembly Line

Today on Furman’s campus, volunteers came together to support the mission of The Brain Tumor Awareness Organization by assembling 600 patient backpacks with resources to be distributed through 3 Charleston cancer centers serving brain tumor patients.

Prior to the David Bailey concert, a presentation was given about the project and the many partners who came together to provide valuable resources within one backpack so that immediate support could be provided upon diagnosis by a neuro-professional.

Supporters of all ages

 

Travelers Rest High School Students

Thank you PWF-Furman University

Buncombe Road Methodist

 

 

Buncombe Road Methodist has a home in our community at “The House” which sits in front of Travelers Rest High School. They encourage the youth through their after-school and outreach ministries and answered the call for this community project.

Job well done guys!

 

 

 

 

Greenville Senior High

The Founder of The BTAO is an alumni of Greenville Senior High School and would like to thank Connor Hipps and his Greenville Red Raider friends for again dedicating their volunteer service to our mission.

Troop 282 returns blessing through community service.

How great it was to have our own Troop 282 turn out to support the cause and one of its troop leaders-Keith (also co-founder of BTAO). A special footnote-Furman University was home to this troop for many years in an authentic train car parked on campus.

It is a true honor to come full circle on a project such as this and see leadership skills reign throughout these young individuals. There is no greater service than to help another.

Many of these volunteers had the opportunity to meet David Bailey and listen to his “Message of Hope”. Thanks to these volunteers, we get to pay it forward.

David Bailey will be performing at Daniel Music Hall at Furman University Saturday September 19th at 7 pm. This will be the first visit in over 3 years to Greenville.

One Furman student, an avid fan, worked with the Presbyterian Westminister Fellowship to bring David to the campus and for him to share his message of hope.

There is no cost for the concert.