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May 2013
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Share Bright Ideas for Brain Tumor Awareness Month
This May, we join Brain Tumor Awareness Month efforts to increase awareness of brain tumors within and beyond the brain tumor community with the launch of our Bright Ideas campaign. 

Bright Ideas Light bulbThe Bright Ideas concept reflects our role in fostering breakthroughs that lead to new thinking, better understanding and more effective treatments. Because when it comes to brain tumors, we don’t know who, when or why. But we do know that Bright Ideas lead to breakthroughs—and breakthroughs bring us ever closer to the answers we all seek. 

You can help spread Bright Ideas in May by liking our Facebook page and following us on Twitter. By sharing our posts and re-tweeting us to your friends and family, you can help us achieve breakthroughs and inform people about the American Brain Tumor Association. You can also visit our website for a full listing of Brain Tumor Awareness Month activities. 

 

ABTA Supports Standards for Health Care Exchange Navigators
The next major milestone in the roll out of the Affordable Care Act is the implementation of state-wide exchanges.  It is through the exchanges that both individuals and small businesses will be able to compare health insurance plans, get answers about coverage options, and enroll in a health insurance plan. Some of the exchanges will be run by the federal government, while many will be run by the states themselves. Consumer assistance with these plans will be provided by individuals known as navigators. The Centers for Medicare and Medicaid Services (CMS) has set forth minimum standards — including training and conflict of interest requirements—which must be met by all navigators and non-navigator assistance personnel who will be operating in states with federally-facilitated exchanges. CMS has not mandated the same standards for state-run exchanges.

In the interest of ensuring that all patients receive the same  level of health insurance navigation support through the state and federally directed exchanges, the ABTA has joined  patient advocacy organizations across the country in signing on to a letter to CMS in support of consistent standards for all navigator and non-navigator assistance personnel. In addition, the letter asks that conflict-of-interest requirements be expanded to include a prohibition on exchange personnel receiving commissions for enrolling exchange participants in other types of insurance, such as life or long-term care.

The ABTA has a comprehensive FAQ on the Affordable Care Act on our website. Questions about the ACA and its impact on the brain tumor community can also be sent to aca@abta.org.


May Webinars Address Survivorship Concerns for Pediatric and Adult Brain Tumor Patients

“Endocrine Issues Facing the Pediatric Brain Tumor Patient”
Friday, May 10 from 2-3 pm (Central time)

The endocrine system is a system of glands in the brain that produce a variety of hormones to send throughout the body. Patients who have a brain tumor, brain tumor surgery, radiation or chemotherapy are at risk for developing an endocrine problem. This webinar, lead by Abby Solomon Hollander, MD, of Washington University School of Medicine in St. Louis, Division of Pediatric Endocrinology, will address the wide range of endocrine challenges that pediatric brain tumor survivors commonly experience. Click here to register for this free webinar. 

The Role of Rehabilitation in Recovery for the Brain Tumor Survivor”
Wednesday, May 29 from 2-3 pm (Central time)
This webinar will discuss how physical therapy can help throughout the recovery process, as well as explain commonly-reported brain tumor-related side effects. The webinar is presented by Kevin Svoboda, PT. Mr. Svoboda is an actively practicing physical therapist in Southeastern Wisconsin and has more than 15 years of clinical experience, and is also a regular lecturer at Rosalind Franklin University of Health Sciences in North Chicago, IL. Click here to register.

 

Read the Spring/Summer 2013 Headlines

Spring Summer Headlines CoverThe ABTA’s Spring/Summer 2013 Headlines newsletter is now available for download. The issue includes articles on:

  • Side and late effects of brain tumor treatments
  • New ABTA-funded research on survivorship and its challenges
  • The ABTA's expanded range of patient and caregiver information and support services
  • Upcoming webinars and events 

Click here to read it today.

 

Registration is Open for the 2013 ABTA Patient & Family Conference: A Focus On Caregiving
 
Family ConferenceDate: Friday, July 26 - Saturday, July 27, 2013
Location: Renaissance Chicago O'Hare Suites Hotel
It’s time to register for this rare opportunity for brain tumor patients and caregivers to hear from national experts on a range of survivorship and quality of life issues.  Many of the conference session topics featured this year came from suggestions from last year’s event attendees including: the role of patients in research; talking with your health care team; symptom management; nutrition and wellness; physical therapy and exercise; and finances, insurance and advance care planning.  
This year’s event registration also includes seating at our 40th Anniversary dinner on Friday evening. Space is limited! Register today


Fundraising Tab

Ida 2013 5K TshirtRegister Today and Receive BT5K T-Shirt

Register for a 2013 BT5K event near you and receive the 2013 BT5K t-shirt. With two BT5K’s in May (Ypsilanti on May 11 and Spokane on May 18) and two in June (Chicago on June 1 and Los Angeles on June 22), now is the time to join us as we make breakthroughs around the country. Register today at www.bt5k.org


Cross the Chicago Marathon Finish Line with Team Breakthrough

It’s not too late to register and begin training for the Chicago Marathon. As an official charity partner of the Bank of America Chicago Marathon, the ABTA's endurance and fundraising team, Team Breakthrough, has a highly desirable but limited number of post-close bibs for the October 13th event. If you’re up to the challenge of running in a world-class marathon while helping to advance the understanding and treatment of brain tumors, register today at www.abtateambreakthrough.org


tab research news

ABTA-Funded Study Explores Survivorship Challenges

A new study appearing in the May 2013 issue of Oncology Nursing Forum examines the challenges faced by brain tumor patients in the years following treatment for highly malignant tumors. The study, entitled “A New Reality: Long-Term Survivorship with a Malignant Brain Tumor,” was funded in part by the American Brain Tumor Association. Mary Lovely, RN, PhD, senior advisor for national programs and services for the ABTA, was the study’s primary investigator. The study, which was based on interviews with 35 brain tumor patients and their caregivers from across the United States, found that the type, location and treatment of a brain tumor can contribute to profound changes and challenges in the survivor’s life, including decreased cognition and motor skills, loss of employment, and shifts in interpersonal relationships. To read the abstract, click here.

 

Results of an NABTT Study of Erlotinib and Sorafenib

ABTA Scientific Advisory Council member Tom Mikkelsen, MD, at Henry Ford Hospital, along with other researchers in the New Approaches to Brain Tumor Therapy (NABTT) Consortium, recently published results of a phase II and pharmacokinetic study of the drugs erlotinib and sorafenib as treatment for patients with progressive or recurrent glioblastoma (GBM). The researchers theorized that the combination of these two drugs, which would interact with two different biologic pathways, would stop tumor growth and increase patient survival. While long term (overall) survival did not change, patient survival at six months did compare favorably to other treatments and showed modest activity. The researchers concluded that combination studies such as these would benefit from the selection of patients for whom molecular markers predict response to the selected drugs. The study appeared in the March 2013 issue of Neuro-Oncology. To read the abstract click here.

 

Sleep Characteristics of Caregivers

Caregivers may experience sleep disturbances that compromise their own health, reports a group of nurse researchers at the School of Nursing at Georgia State University and the University of Pittsburgh.The study, which appeared in the March 2013 issue of Oncology Nursing Forum, reported on the sleep characteristics of family caregivers of individuals with a primary malignant brain tumor. The study suggests that health care professionals inquire about caregiver sleep patterns, and implement interventions to improve sleep when needed.To read more click here.

 

The St. Jude Experience: A Study on the Survival Outcomes of Pediatric Patients with Focal Low-grade Brainstem Tumors

The authors of an article posted in the Journal of Neurosurgery: Pediatrics (March 2013), report the management and outcome of focal brainstem tumors in pediatric patients. Researchers performed a retrospective review of the records of all children diagnosed with radiographically confirmed low-grade focal brainstem gliomas from 1986 to 2010. Each of the 52 patients selected for the study underwent biopsy or resection for tissue diagnosis with follow-up care at St. Jude Children’s Hospital. Event-free survival (EFS) and overall survival were evaluated. Study showed that patients with low-grade focal brainstem gliomas have 5 and 10 year survival rates of 98 percent and 90 percent, respectively. Click here to see the abstract.


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Founded in 1973, the American Brain Tumor Association was the first and is now the only national nonprofit organization dedicated to providing both support services to brain tumor patients and their families and the funding of brain tumor research. For more information, visit www.abta.org.

This information is provided by the American Brain Tumor Association, 8550 W. Bryn Mawr Ave., Suite 550, Chicago, IL 60631. For more information about the American Brain Tumor Association, call toll-free 866-659-1030, write info@abta.org or visit www.abta.org.
 
The "American Brain Tumor Association" name and logo,  the "Breakthrough for Brain Tumors" name and logo, and "TrialConnect" are registered trademarks of the American Brain Tumor Association. The "Team Breakthrough" name and logo are trademarks of the American Brain Tumor Association. All rights reserved. 
 
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Having Fun Raising Funds

To learn more about our events, to search for events in your state, or to learn how to host your own volunteer fundraising event, visit: 


Breakthrough for Brain Tumors Ypsilanti 5K Run & Walk
May 11, 2013
Ypsilanti, MI

Vernon Hills Brain Tumor Walk
May 11, 2013
Vernon Hills, IL 

Breakthrough for Brain Tumors Spokane 5K Run & Walk
May 18, 2013
Spokane, WA

Sharing Hope: Walk the Walk, Talk the Talk
May 18, 2013
Storrs, CT 

2013 Thom Mathes 5K/1 Mile Fun Run
May 18, 2013
Shelby Township, MI 

Cocktails & Appetizers - Act for Alan
May 30, 2013
Chicago, IL 

Breakthrough for Brain Tumors Chicago 5K Run & Walk
June 1, 2013
Chicago, IL

Zumbathon for the ABTA
June 1, 2013
Oak Creek, WI

12th Annual Frank's Run
June 1, 2013
Royersford, PA 

9th Annual Head for the Cure 5K
June 8, 2013
Carmel, IN 

Greendale Community Charity Walk
June 15, 2013
Greendale, WI

Team Breakthrough San Francisco Full & Half Marathon
June 16, 2013
San Francisco, CA

Breakthrough for Brain Tumors Los Angeles 5K Run & Walk
June 22, 2013
Los Angeles, CA

8th Annual Teeing Up for Others Golf Outing
July 19, 2013
Columbia Station, OH 

Team Breakthrough Life Time Chicago Triathlon
August 25, 2013
Chicago, IL

Van Dorston Combat Cancer Team 5K
September 14, 2013
Sanford, NC 

Team Breakthrough Philadelphia Rock 'N' Roll Half Marathon
September 15, 2013
Philadelphia, PA

Team Breakthrough Bank of America Chicago Marathon
October 13, 2013
Chicago, IL

Breakthrough for Brain Tumors Dallas 5K Run & Walk
October 26, 2013
Dallas, TX 

Breakthrough for Brain Tumors NYC 5K Run & Walk
November 9, 2013
New York, NY

 
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Connect with Others at Connections Online 
The ABTA's Connections online support community links patients, families, friends, caregivers and health care professionals with each other for support and inspiration. It is a safe place to visit, join and interact with members of the brain tumor community nationally and around the world.
 
Get Caregiver Support through MyCaringLink
MyCaringLink, powered by Lotsa Helping Hands, is the ABTA's personalized online caregiver support tool. 


Find a Clinical Trial Through TrialConnect

The ABTA's TrialConnect, a free and confidential service administered by EmergingMed, is offered in English and Spanish. Read more.


Consultation Services

Our Care Consultants provide brain tumor information, support and education for patients, families and health care professionals. Write abtacares@abta.org or call our toll-free CareLine at 800-886-ABTA (2282).
 
 

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 websites or individual(s)/companies/institutions operating these websites.