Survivors join a national network of survivors by participating in this year's Vigil service.

The 3rd Annual Brain Tumor Vigil Service hosted by The Brain Tumor Awareness Organization was held at Hollings Cancer Center in The Pearlstine Healing Garden.

Survivors join a network of others in remembering those affected by a brain tumor diagnosis. The vigil service has been hosted annually in Washington, DC during Brain Tumor Action Week when advocates on behalf of The North American Brain Tumor Coalition meet legislators regarding issues that affect their experience as brain tumor patients and survivors. The Healing Exchange B.R.A.I.N. Trust is home to over a dozen online support groups by list serv and serves over 2200 members. As one of the original support groups available online specific to brain tumor patients and their families, it has served as the connection not only of survivors and advocates nationally but also internationally.

Last year, the vigil was held remotely in several locations and in 3 countries. In Washington, DC a scroll of names is displayed and the names collected throughout the years of “Angels” and “Warriors” are recited. The service is a beautiful remembrance and serves as an awareness and outreach tool to bring people together each year.

Founders of The Brain Tumor Awareness Organization at the Trident Brain Tumor Awareness Month Exhibit

Trident Health System’s Cancer Center promotes Brain Tumor Awareness Month at their center. Other activities include raising awareness by kicking off the “Hidden Under Our Hats” campaign where brain tumor survivors decorate and donate a hat. The hat tells their story from diagnosis date, including tumor type and other personal attributes.

Trident began the year by forming a brain tumor support group which meets on the 3rd Tuesday of the month.

Brain Tumor Awareness Display

Kicking off Brain Tumor Awareness Month in Charleston, SC

May 2009 was the First National Brain Tumor Awareness Month as proclaimed by The House of Representatives in H.R. 1124.

As South Carolinians, we are proud that Governor Sanford had proclaimed Brain Tumor Action Week for May 1-7 each year since 2004; and Brain Tumor Awareness Month since 2006. Our kick off campaign to raise awareness throughout the state was to present the Governor’s Proclamation to seven centers serving brain tumor patients in South Carolina.

Along with displays of the Governor’s Proclamation, additional materials were provided to resource libraries and offered at information exhibits from the fellow member organizations of The North American Brain Tumor Coalition. Our official “Go Grey in May” campaign presented survivors with their own personal copies of the Governor’s Proclamation wrapped in grey ribbons and adorned with our organization card and grey ribbon lapel pin.

Survivors volunteered to man exhibit tables, share their story, attend our vigil service, donate their hats to the Hidden Under Our Hats exhibit, don National Brain Tumor Awareness T-Shirts, Brain Tumor Awareness Organization bracelets and sport silver ribbon pins.

This month was a milestone and tribute to the volunteers and board members that have made this campaign possible through their support and dedication to the mission.

 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.

Today we met with the Neuro Oncology Team at Trident Healthcare Systems at the North Charleston location. What an amazing center! Upon entering the center, the colors were warm and soothing and the layout was easy to navigate and the information desk is right there ready to answer your questions and provide direction.

The staff is excited about their new stereotactic radiosurgery machine which is an upgrade from their previous machine. We enjoyed touring the center and visiting their resource room where patients are able to meet with one of the members of the neuro-team and learn about resources which can meet their needs.

We look forward to returning to Trident and providing support for their outreach efforts in the community, additional resources for the patients that they serve and to raise awareness so that we can make an impact on this disease!