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May 2011

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2011 Path to Progress Raises $1 Million 
Blustering winds and brisk temperatures couldn't dampen the spirits of those assembled at Chicago's Soldier Field to run and walk the annual 5K along the city's beautiful lakefront this past Saturday. Thousands of ABTA supporters, including more than 300+ teams, raised more than $1 million at the Path to Progress, making this year's event the most successful yet. 

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Victoria Kennedy

Victoria Reggie Kennedy Headlines Dinner July 29
Victoria Reggie Kennedy is the featured speaker at the American Brain Tumor Association's 2011 annual meeting dinner, "Strength through change and challenge," being held at 7:30 p.m. on Friday, July 29, at the Lincolnshire Marriott Resort, just north of Chicago. Mrs. Kennedy, the widow of U.S. Senator Edward M. Kennedy who passed away in 2009 from a brain tumor, has been described by the New York Times as the late Senator's "closest confidante in politics and life." Her talk will discuss her life with the Senator and the brain tumor diagnosis that irrevocably altered the direction of their lives. The event is being held in conjunction with the ABTA Patient-Family Connections Meeting & Retreat. Learn more

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Patient-Family Connections Meeting
Join us for a two-day event that brings patients, survivors, family members and caregivers together for presentations from national experts on brain tumor research, treatment and quality of life issues. The 2011 Patient-Family Connections Meeting & Retreat, July 29-30 at the Lincolnshire Marriott Resort, also provides an opportunity for attendees to relax, restore and connect with others coping with a brain tumor diagnosis. Learn more

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Our Family Helping Your Family
Chris Diez had a beautiful, growing family. His wife Wendy was nine months pregnant with their second child when he was diagnosed with a glioblastoma brain tumor. Ten days after they welcomed their new baby Claire into the world, just 22 days after his diagnosis, Chris lost the battle with his brain tumor. Every day more than 500 people like Chris are newly diagnosed, and more than 600,000 are living with this devastating illness. The Diez family was able to count on the ABTA during their dark days. Now Wendy celebrates Chris' life by raising funds and volunteering for the ABTA. Learn more.

 

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May is Brain Tumor Awareness Month
Take the Brain Tumor Awareness Month Pledge in May and receive two free gray awareness wristbands - one for you and one for a friend. Learn more at www.abta.org.

 

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Article Addresses Clinical Practice Guidelines for Brain Tumors
A recent Journal of the National Comprehensive Cancer Network features an article outlining the updated NCCN clinical practice guidelines for the diagnosis and treatment of central nervous system tumors. Deneen Hesser, ABTA's director of research, is among the co-authors of the new guidelines and a member of the NCCN Guidelines Central Nervous Systems panel. Read the NCCN guidelines.

Fatigue Reduces Cognitive Functioning in Childhood Cancer Survivors
Fatigue and sleep problems may dramatically reduce the thinking and reasoning abilities of adults who survived childhood cancer, according to new research from the Childhood Cancer Survivor Study. The study, appearing in the April 11 issue of the journal Cancer, involved 1,426 childhood survivors of brain and central nervous system tumors, leukemia and lymphoma between 1970 and 1986, and their healthy siblings. Participants completed several tests proven to measure memory, organization, task efficiency and emotional regulation - all indicators of neurocognitive functioning. Rates of sleep disturbance were not substantially higher among cancer survivors, but those already at risk for cognitive problems had a three-to four-fold increase in neurocognitive difficulties when they were sleep deprived or fatigued. Read more.

Rare Disease Patients, Caregivers Look to Peers for Everyday Help
A recent study by the Pew Internet & American Life Project found that rare disease patients (including those with brain tumors), or those caring for someone who has a rare disease, often look to their peers via the Internet for advice. The report, "Peer-to-Peer Healthcare," was based on a national telephone survey of 2,0001 adults and an online survey distributed by the National Organization for Rare Disorders. The majority of people surveyed said they most value their physician's opinion on medical information, and view medical advice from peers as a supplement. However, 46 percent of Internet users said they found the advice of fellow patients and caregivers to be the most helpful when it comes to quick remedies for everyday health issues, compared with 41 percent who said physicians were the most helpful. Read more.

 

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Two Reports Released on Brain Tumor Statistics in U.S.
Two recent reports further clarify the state of brain tumors in the U.S. The Central Brain Tumor Registry of the U.S. (CBTRUS) recently released the "2011 Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States". A separate article, the "Annual Report to the Nation on the Status of Cancer, 1975-2007, Featuring Tumors of the Brain and Other Nervous System," appearing in the May Journal of the National Cancer Institute, is a collaboration between the American Cancer Society, the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI) and the North American Association of Central Cancer Registries (NAACCR). In general, primary brain tumor diagnosis rates remain stable while five-year survival rates continue to increase. For a summary of the latest brain tumor data, read ABTA's Facts & Statistics.

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FDA Approves New GBM Treatment Device
The Food and Drug Administration (FDA) recently approved the NovoTTF-100A System (NovoTIFF) for the treatment of adult patients with recurring glioblastoma following chemotherapy treatment. The portable, wearable device delivers anti-cancer therapy while patients maintain their normal daily activities. The FDA approval was based on data from a randomized clinical trial involving 237 patients with recurring GBM following surgery, radiation and chemotherapy treatments. Approximately 14 percent of patients treated with NovoTIFF had a tumor response, compared to 10 percent receiving chemotherapy treatment. Patients with the NovoTIFF alone achieved a comparable overall survival time to patients treated with chemotherapy, however, NovoTIFF patients reported better quality of life scores and fewer side effects. Read more.

Medulloblastoma May Include Four Distinct Subtypes
New research appearing in the Journal of Clinical Oncology identifies four distinct subgroups of medulloblastoma with unique demographics, clinical presentation, genetic profiles and clinical outcome. The groups - WNT, SHH, group C and group D - are easily identified and should be taken into consideration during clinical trial development and other future medulloblastoma research. Read more.

Fluorescent Dye May Aid Pituitary Tumor Surgery
New research presented at the American Association of Neurological Surgeons (AANS) Annual Scientific Meeting in Denver last month, supports the use of fluorescence endoscopy, the surgical removal of a tumor through the nasal passage aided by the use of fluorescent dye. Despite advances in equipment, surgical removal of pituitary tumors remains challenging because of the difficulty in differentiating tumor from normal brain tissue. With fluorescence endoscopy, the dye indocyanine green allows surgeons to more accurately view microscopic vessels underneath the surface of, and surrounding, the pituitary gland to improve surgical outcomes. Read more.

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NCI Recruiting for Pediatric Study on Effects of Radiation Treatment
The National Cancer Institute (NCI) Center for Cancer Research (CCR) Pediatric Oncology Branch in Bethesda, Md. is conducting a study on the effects of radiation therapy on pediatric patients with CNS tumors, including brain tumors. Participating patients will receive standard radiation treatment with no additional drugs. Read more.

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Check Out ABTA's New TrialConnect™
The ABTA is now offering a service that links brain tumor patients with appropriate clinical trials based on tumor type and treatment history. TrialConnect™, a free and confidential service administered by EmergingMed, is offered in English and Spanish. Read more.

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Founded in 1973, the American Brain Tumor Association (ABTA) was the first non-profit organization dedicated to funding brain tumor research. Today, the ABTA is a catalyst for research-based breakthroughs in the causes, diagnosis and treatment of brain tumors, and is the recognized the leading resource in patient-centered brain tumor information, education and support. Make a donation to the American Brain Tumor Association.

This information is provided by the American Brain Tumor Association, 2720 River Road, Des Plaines, Illinois, 60018.

For more information on ABTA, call toll-free: 1-800-886-ABTA (2282), write info@abta.org, or visit: www.abta.org.

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ABTA UPCOMING EVENTS

May 20, 2011
Spring Mount, Pa.
The Krystle Ball

May 21, 2011
Carmel, Ind.
7th Annual Head for the Cure

May 21, 2011
Metairie, La.
Kick Brain Cancer for
Good


May 21, 2011
Spokane, Wash.
3rd Annual Joggin for the Noggin

May 21, 2011
Carmel, Ind.
7th Annual Head for a Cure

June 11, 2011
Shelby Twp., Mich.
Thom Mathes 5K Run/1 Mile Fun Walk

June 18, 2011
Greendale, Wis.
Greendale Community Charity Walk

June 18, 2011
Crawfordsville, Ind.
Ron Love Walk/Run for Hope

June 25, 2011
Seattle, Wash.
Seattle Rock 'N Roll Half Marathon

June 26, 2011
Los Angeles, Calif.
The Eric Perry Memorial 5K

July 1-July 2, 2011

St. Thomas, Pa.
8th Annual Jeffrey L. Appleby Yard Sale

July 16, 2011
Chicago, Ill.
Kessler Cruise for a Cure

July 22, 2011

Columbia Station, Ohio
6th Annual Teeing Up for Others

July 23, 2011
Leesport, Pa.
3rd Annual Following the Footsteps

July 25, 2011

Middleton, Mass.
Neuro Golf

July 30, 2011

Macomb Township, Mich.
14th Annual Paul Brazen Golf Outing

August 6, 2011
Philadelphia, Pa.
JAG Tube Float

August 6, 2011

Joliet, Ill.
Wheels for a Cause Car & Bike Show

August 14, 2011
Fire Island, N.Y.
5th Annual "Run for Rose"

Sept. 10, 2011
Waltham, Mass.
JB 5K Blastoff

Sept. 10, 2011
St. Louis, Mo.
14th Annual St. Louis Fall Festival

Sept. 24, 2011
Des Moines, Iowa
The Brain Tumor Walk, For the Journey of Hope and Change

Sept. 26, 2011
Rocky River, Ohio
Eldon Blake Memorial Walk/Run

Oct. 9, 2011
Chicago, Ill.
Bank of America Chicago Marathon

Interested in hosting an ABTA event? Contact us at events@abta.org.

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This communication is not intended as a substitute for professional medical advice and does not provide advice on treatments or conditions for individual patients. All health and treatment decisions must be made in consultation with your physician(s), utilizing your specific medical information. The links set out on this communication are provided for your convenience only. The American Brain Tumor Association does not endorse the information contained on the linked Web sites or individual(s)/companies/institutions operating these websites.