Archive for the ‘Survivors’ Category

Patient Advocate Foundation Co-Pay Relief Program

Tuesday, 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/

7 Year Grade 3 Oligo Brain Tumor Survivor

Friday, June 26th, 2009

 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!