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 Duke-the direction where we go with this is in the planning stages.

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

Today we met with the team at Roper St. Francis in Charleston, SC. Currently, the outpatient radiation oncology center is downtown and across the street from MUSC. The future holds plans of a new center with expanded services including support groups, rehabilitation services and more.

We toured the center and learned about their Cyberknife unit and how it is used to treat primary brain tumors and other cancers. It is great to know that patients have some of the same options here in South Carolina that they often learn about on the internet available somewhere else.

We were excited to be able to provide on our first visit, a Proclamation by Governor Sanford for Brain Tumor Action Week and Brain Tumor Awareness Month and share information about our initiatives within the community to gain sponsors and provide more specific support.

Our state is fortunate to have such pro-active health care professionals who also have such compassion. The medical team member we met with had come from a background in hospice/palliative care and she had a keen understanding about navigating  the system and the difficulties one faces immediately upon diagnosis.

May will be our first “Go Grey in May” Campaign across the state where we will have 7 cancer centers kicking off Brain Tumor Awareness Month  and awareness activities.

Thanks Roper St. Francis for sharing your program with us today!

Today we introduced our organization to the Brain Tumor Support Group which meets the 2nd Wednesday of each month at 12 in the Clinical Sciences Building at the Medical University of South Carolina.

We shared with the group that Governor Sanford had proclaimed “Brain Tumor Awareness Month” for South Carolina for the last 2 years and when the House of Representatives proclaimed “National Brain Tumor Awareness Month”, we were proud to have had state support for the same initiative.

For the last 5 years, Governor Sanford has supported our community efforts by proclaiming the first week of May as “Brain Tumor Action Week” which is the week in South Carolina when we contact our representatives regarding issues that affect brain tumor patients, caregivers and survivors. In Washington, DC, advocates from all over the nation gather to address Congress on behalf of The North American Brain Tumor Coalition and share their position with them in hopes that increasing funding and strengthening research programs will eliminate brain tumors.

The Brain Tumor Support Group at Hollings Cancer Center is one of the only support groups in South Carolina specifically for brain tumor survivors and their caregivers. Healing occurs when one or more people are able to come together and share their stories while lending support through the various stages following diagnosis.

We were honored to be a part of this group at Hollings and look forward to sharing more information and support with them during Brain Tumor Action Week activities and Brain Tumor Awareness Month.