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Colorado Links  |  Brain Tumor Organizations  |  Research and Information | Books for Kids
  Brain Tumor Survivors   |  NeuroSciences for Kids  |  NeuroSciences

 

BrainstormWeb's Top Picks

Clinical Trials and Noteworthy Treatments for Brain Cancer 
http://www.virtualtrials.com  aka "Al Musella's Virtual Trials"
Information on new and experimental treatments for brain tumors. Can browse treatment listings by tumor type, geographic location and other keywords. Online discussion forum.

TumorFree.com provide resources, support, and comfort for brain tumor patients, caregivers, and families. I designed this site with friends who have put together a wonderful set of links for caregivers and the newly diagnosed.

Our Favorite Doc Offers Hope:

Dr Edward B Arenson, MD, is the personal website for Scott's neuro-oncologist and the co-director of the Colorado Neurological Institute's Center for Brain & Spinal Tumors. He treats the whole patient with the most aggressive medical protocols available and cares for his patient's quality of life and spirituality as well. One very special project is his Monthly Healing Service (see CNI entry below).
Reading Recommendations: CURE: Cancer Updates‚ Research & Education, a free quarterly magazine that combines the science and humanity of cancer for those who have to deal with it on a daily basis.
For Cancer Caregivers:
CaregiverHope.com offers encouragement for cancer caregivers and a sneak peek at an upcoming book

CaregiverHope.com offers encouragement, links to organizations for caregivers, statistics, recommended reading. Also at CaregiverHope.com, get a peak into Shelly's book for caregivers which goes into our whole story in detail (for patients and families, too): Damocles' Wife: The Inside Story of Cancer Caregiving & Long-Term Survival in the Midst of Marriage, Motherhood & Making Life Matter.

Helping You Connect for Support

Lance Armstrong Foundation at www.livestrong.org inspires and empowers people affected by cancer. LAF helps people with cancer focus on living. From the moment of diagnosis, the LAF provides the practical information and tools you need to live life on your own terms. Contact the LAF to request your free LiveSTRONG Notebook (pay shipping and handling only), a great way to organize and prepare for medical appointments and track medications and treatments.

Lotsa Helping Hands provides a free community coordination service for people going through life crises. A patient’s multiple communities can log on to see what the person needs and sign up for specific tasks, from bringing food to running errands to providing transportation to walking the dog.

RedToeNail.org, an online community for people with cancer. The site allows anyone to set up a secure blog (see CURE, Summer 2005) to record what is happening in his or her cancer experience. Friends can log on and ask for e-mail updates whenever an update is posted. Your blog is whatever you make it. Friends and family can leave comments, discuss and contact you through the blog. It can be open to the public or visible only to those you invite.

The Tug McGraw Foundation was established by Tug McGraw in 2003 to raise funds to enhance the quality of life of children and adults with brain tumors and their families by stimulating and facilitating research that addresses the physical, social, emotional, cognitive, and spiritual impact of the disease.

Colorado Links

CNI (Colorado Neurological Institute) Center for Brain & Spinal Tumors -- the place to go for the most aggressive treatment in Colorado for brain tumors with a unique team approach. CNI hosts a monthly Patient and Family Support Group and Monthly Healing Services. Details on website.

Meningioma Mommas - A Highlands Ranch, CO-based nonprofit organization, which provides national and international meningioma support with a commitment to raising funds for meningioma-specific research.

ARTMA a fundraiser to benefit pediatric brain tumor research in Colorado. The bi-anual event is an evening art auction that honors the memory of the founders' daughter, Morgan Adams, who lost her battle to a GBM in November 1998, when she was 6.

Steve's Brain Tumor Climb -- a brain tumor survivor has completed climbing the peaks over 14,000 feet to raise awareness of brain tumors and raise money for research by the American Brain Tumor Association.

Scott's Brain Tumor Success Story -- survivor of an astroyctoma III whose treatment ran the gamut of aggressiveness, including high-dose chemo and a stem-cell rescue. Now his MRI's are all clear!

University of Colorado Health Sciences Center - Cancer Support
The UCHSC runs a Brain Tumor Support Group for any brain tumor patient and family member (caregivers, friends). Meets at the Anshutz Outpatient Pavilion in Aurora. Call t
he Cancer Resource Center, 720-848-0268 for more information or visit the website for this and other survivor support.

Brain Tumor Organizations
for Patient Info & Support plus Research Funding

The Brain Tumor Funders’ Collaborative (BTFC) is a partnership among private philanthropic and advocacy organizations designed to bridge the “translational gap” that prevents promising laboratory science from yielding new medical treatments. On June 30, 2005, BTFC announced a new, joint funding initiative: to provide up to three $2 million multi-year grants to fund collaborative, innovative and novel approaches to brain tumor research. When raising money or donation to organizations to fund research toward finding a cure, we recommend your donations go to one of these organizations so that it can be part of a larger, more substantial effort.

Further information about the BTFC and its funding initiative can be found at www.braintumorfunders.org.  You can subscribe at their website for an e-newsletter to stay informed of their projects.

Accelerate Brain Cancer Cure, ABC2, is another organization stands out for its own approach to finding a brain cancer cure: ABC2 seeks to accelerate brain cancer cure through -- Funding research, development, and entrepreneurial and organizational efforts in the brain cancer field. -- Building collaboration among researchers, educators, medical professionals, industry, government, patients and family members. -- Providing action-oriented information and analysis to all involved parties. -- Raising overall awareness of brain cancer. We saw founder Steve Case speak at the 2006 inaugural Lance Armstrong LiveSTRONG Summit and are duly impressed!

Research and Information

A,B,C's of Brain Tumors
Find out all about glioblastomas and related malignant tumors of the brain. Includes discussion of treatments, surgery, chemo, and therapies.
ABTA Dictionary for Brain Tumor Patients
This dictionary of neurological terms was compiled by the American Brain Tumor Association.
Brain Tumor Center at MGH
Massachusetts General Hospital offers links to information about the treatment of glioma, astrocytoma, glioblastoma and other brain tumors.
Brain Surgery Information Center
Details of neurological conditions that may require brain surgery and an outline of what the patient may expect.
Clinical Trials and Noteworthy Treatments for Brain Cancer
Information on new and experimental treatments for brain tumors. Can browse treatment listings by tumor type, geographic location and other keywords. Online discussion forum.
Family Caregiver Alliance: Fact Sheet -- Brain Tumor
Find facts about brain tumors at this site, including tumor symptoms, diagnosis and treatment.
National Cancer Institute: Adult Brain Tumor
Site offers overview of brain tumors, including types, stages, symptoms, diagnosis and treatment. Site is part of the PDQ, an NCI cancer information database. A cancer hotline number is also provided.
Medifocus Guidebook on Glioblastoma
Comprehensive overview of glioblastoma multiforme brain tumors, including treatment options and medical journal abstracts.
UCLA Neuro-oncology
Access educational material on the brain, brain tumors, and symptoms. Get statistical information on brain cancer.

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Brain Tumor Survivors

Survivor Stories from VirtualTrials.com has many stories of long-term survivors with e-mail links so you can contact them. 
 
davidmbailey
 a performing songwriter diagnosed with a GBM brain tumor in 1996.  He survived 14 years after being told he had six months to live. David turned to his songwriting to find strength and reach out to others in hope.  His albums are available.

Steve Helle's Brain Tumor Climb 
A brain tumor survivor has finished climbing the Colorado peaks over 14,000 feet to raise awareness of brain tumors and raise money for research by the American Brain Tumor Association.

Scott Vickroy's Brain Tumor Success Story
Survivor of an astrocytoma III whose treatment ran the gamut of aggressiveness, including awake craniotomy, photodynamic therapy, high-dose chemo and a stem-cell rescue. Now his MRI's are all clear!

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