2009 Patient Congress-Healthcare reform

Many of the “asks” on behalf of patients affected by a chronic or life-threatening disease are:
End the Medicare Waiting Period and Eliminate Pre-Existing Exclusions. Co-Pays are a major concern as the mounting financial burden is driving many families to bankruptcy in an effort to afford their medical care.
This year, the founder of The Brain Tumor Awareness Organization, Julie Houston, also a State Policy Liaison for NPAF, along with Casey Galloway, Administrative Assistant for The Brain Tumor Awareness Organization and Peggy Baxter-South Carolina Cancer Alliance Board Member, American Cancer Society Volunteer and State Policy Liaison for NPAF met with South Carolina Congressmen and/or their Legislative Assistants to urge healthcare reform in 2009-to be enacted in 2010.

 

Nancy Daveport-Ennis Founder/President of The National Patient Advocate Foundation

Elizabeth Edwards

We appreciate the opportunity to represent South Carolina in this important dialog regarding healthcare reform and want to thank our Representatives for educating us about their part in this important national reform issue.

Representing South Carolinians

We also would like to thank The National Brain Tumor Foundation for conducting their study “No One Can Afford A Brain Tumor” which was presented as part of our exhibit to illustrate on behalf of brain tumor patients, the very issues being considered for reform which could greatly reduce their access to care issues and increase their survival. Thanks also to the many survivors who lent their voice through their works featured in our exhibit: Richard Harvey-poet; David Bailey-musician; Shannon O’Brien-visual artist; Jennifer Gutierrez-former nurse/advocate/support group facilitator; and Samantha Scolamiero-Founder of The BRAIN TRUST list serv. These long term survivors have brought their voices to Washington DC annually during Brain Tumor Action Week to educate Congress about the specific issues and needs that face one upon diagnosis with a brain tumor.

Your voices were heard by many in attendance at Patient Congress this year.

Thank you National Patient Advocate Foundation for all your hard work and for empowering Patients and Advocates to impact change!

The National Patient Advocate Foundation

View more pictures from The 10th Annual Patient Congress

Our license plate project

HB 683 was signed into law today thanks to Jennifer Gutierrez who introduced this initiative to Senator Dempsey and was carried forth by The Missouri Legislature to the Governor’s Desk today.

Jennifer Gutierrez-Missouri Affiliate

What began as a dream to provide patients needed funding in the State of Missouri, became a belated birthday wish come true for Jennifer Gutierrez, a brain stem glioma survivor. Today is a historical moment for all brain tumor Warriors and families of Brain Tumor Angels as Missouri residents have the opportunity to strengthen the voice of those affected by brain tumors.

As the first state to enact into law this license plate featuring a grey ribbon which is the universal symbol for brain tumor awareness, and “Brain Tumor Awareness.Org” which provides a website of resources to ease the navigation process for brain tumor patients, it is the hope of this President that an affiliate from each of the remaining 49 states will step up to introduce this initiative in their state. Funds generated by the purchase of these license plates are dedicated to patient assistance funds for non-medical needs as described in our application process.The financial devastation that befalls families faced with a brain tumor diagnosis is overwhelming and this public support of awareness can change lives.

It is the courage and commitment that is demonstrated by survivors like Jennifer Gutierrez that bring this awareness to decision makers who can facilitate change, improve the quality of lives of survivors and assist in a grassroots movement to increase survival.

On behalf of the Board and the Founders of The Brain Tumor Awareness Organization, we are grateful to Jennifer Gutierrez, Senator Dempsey and his staff, The Missouri Legislature and Governor Jay Nixon for providing the Nation with an initiative worth duplicating state by state.

Thank you Missouri Residents for uniting to make this initiative a success in honor of the many in the fight for survival of this dreaded disease. Please know that gaining the 200 supporters for this license plate in the first year is a great achievement and one that must continue year after year to sustain the awareness and funding made available by its presence in your community. Share this blog entry and the website where a plate registration can begin!

It is also worth noting that when this bill was signed into law, July 1st, 2009, it is seven years from the date of co-founder Keith Houston’s 1st brain tumor resection and his son’s birthday. We (the Founders) are especially grateful to share this momentous occasion with the reason that it all started-a brain tumor diagnosis and the need for awareness.

 Today was an annual checkup for Keith, co-founder of The Brain Tumor Awareness Organization at The Preston Robert Tisch Brain Tumor Center at Duke. We met several new folks in a cozier clinic dedicated to brain tumors whereas we used to share the neuroscience/spine clinic. It was like an instant support group! Everyone was so supportive and interested in each other’s experiences.

It is amazing when you bring a group together who have experienced tremendous miracles due to a common factor (Duke) that you understand the importance of support and awareness. After meeting with Dr. Reardon and hearing that Keith is still cancer-free and necrosis free, we attended the board of directors’ meeting where we learned more about those across the country that have been touched by this disease and given hope thanks to the researchers and doctors at The Preston Robert Tisch Brain Tumor Center at Duke. Their breakthroughs have given long-term survival to many who were initially told that their time was 6 months to a year.

Keith is a model of this type of breakthrough in science and a testimony to “there is hope.” Through our efforts, we continue to meet more and more of the “Duke family” of survivors and are excited to be able to raise awareness and spearhead advocacy efforts within our state of South Carolina and beyond through our organization-The Brain Tumor Awareness Organization.

Our hope is to see the semi-postal stamp project put on the nation’s horizon so that the public can fund brain research. The previous successful model of the breast cancer semi-postal stamp provided valuable funding which resulted in earlier detection programs and research funding. We believe that brain research is the next logical choice for a semi-postal as it affects so many and is one of the most under-funded areas.

The Preston Robert Tisch Brain Tumor Center would benefit from a commemorative stamp promoting their image. I envisioned an”Angels” stamp to further the awareness and promotion of the “Angels Among Us” Annual Fundraiser. I presented this idea and image at the board meeting as it would benefit Duke directly. I hope that when I meet with the member(s) of the Citizens’ Stamp Advisory Committee that they will approve such a project to benefit a worthy research institute. Commemorative stamps benefit organizations that they represent through their message and image.
Unfortunately, this author just recently learned that commemorative stamp guidelines prohibit benefiting and educational institute but that proposing a stamp to honor Mr. Tisch and promoting his image on items to fundraise with may benefit

Thank you Duke for giving us hope, giving us the inspiration to raise awareness and support others and the courage to dream big!

Many individuals support a cause, many community members understand a cause, but a cause if often supported by those that live it and adapt with it-surviving it.

Dedicated Volunteers

No great idea or plan materializes without the dedication and support of those individuals who together make a mighty difference. The simple things- phone calls, decorating trees in exchange for radio ads, greeting new faces and going to new places; to the difficult tasks- grant writing, planning, recruiting, sharing stories, listening to the unmet needs of those affected by a brain tumor.
Each one of our volunteers brings to the landscape of our vision: a gift, a passion, an understanding, a story and a purpose- to offer support and provide resources.

Thanks to all those individuals who have lent a hand at an event, pulled together community members to raise awareness and/or funds, those staff members at the various centers who champion this cause and lastly to those survivors, who unselfishly share their time and energy while undergoing treatment or balancing life’s daily tasks. They are the true Warriors who remind us that together, we do great things. Since the beginning of 2009, our volunteer staff has contributed 4,507 hours! In perpsective, that is 6 full time staff positions!

We are expanding our volunteer network across the state and invite you to learn more about the opportunities available. Please <a title=”Volunteer” href=”http://www.braintumorawareness.org/volunteerform.html”>contact us </a>to discuss how you can join this invaluable team of advocates!</div>

The East Bay Crab Shack hosts Donate Your Plate on the 28th!

 

Grey Ribbon Medallions

Donate Your Plate on the 28th is a campaign to partner with restaurants within our community to raise awareness and funds for brain tumor research and support programs.

The BTAO had it’s very first wine tasting at The Cook’s Station on Thursday May 21st 2009. There were 15 people that attended as well as the wonderful staff of The Cook’s Station, we had great hors d’oeurves prepared by Mark Pollard and had some fantastic wine that was donated to us from our friends at the Jocelyn Lonen Winery. We had a great time and look forward to the next endeavor with them. We want to thank Julie Jester for all of her hard work and a very special thanks to Kelly and John for allowing use the opportunity to have such a wonderful event.

Mayor Reynolds Proclaims "Melvin McCall Day"

The 10th Annual Melvin McCall “Strokes For Progress” Golf Tournament was honored by the Proclamation of “Melvin McCall Day” by Travelers Rest Mayor Roy Reynolds.

Shawn and Lee McCall accepted the Proclamation on behalf of tournament supporters and sponsors who have benefited brain tumor research through their participation in the tournament begun in honor of the McCall Brothers’ father, Melvin McCall, who lost his battle to a brain tumor.

Many families and businesses from the Travelers Rest community play a key part in the tournament’s success annually and have welcomed NASCAR celebrities to their hometown prior to the tournament. The tournament boasts the largest autographed NASCAR memorabilia offered for auction each year.

This year, The Brain Tumor Awareness Organization is the beneficiary of the funds raised to help assist families in the community affected by a brain tumor diagnosis. The Travelers Rest community participated in the “Go Grey in May” campaign to raise awareness and build community partnerships to fund research and support programs.