The Wellness Community
www.wellnessdelaware.org - Delaware Branch
www.wellness-community.org - National Organization (click here to find one of the 22 locations across the U.S.)
The Wellness Community is an international non-profit organization dedicated to helping people with cancer and their loved ones by providing professionally led programs of emotional support, education, and hope as an integral part of conventional medical treatment. They offer support groups, stress reduction programs, informational and educational workshops, and community activities for people with cancer and their families. All of their programs are free of charge!
"As Kelly’s cousin, I can personally vouch that the support they offered to Kelly and Chris was phenomenal. I personally experienced the priceless value of their services when I visited Kelly during the summer. We all went to a Brain Tumor Support Group meeting. We were saddened as Kelly just started taking a new chemotherapy drug the night before, which her doctors were considering her last hope, and she got extremely ill from it. Kelly didn’t want to take it anymore. One of the members of the support group had actually used that particular chemotherapy drug and told us what he did when he took it to prevent him from getting sick. We tried it the next night and it worked! As I said, I know the peer support, caring, and creative programs offered by The Wellness Community greatly benefited Kelly and everyone else who experienced it."
Cancer Care Connection
www.cancercareconnection.org
Cancer Care Connection is a non-profit service organization that helps people make informed decisions through professional coaching and personalized information and resource connections. Whether you contact them for yourself, a family member, a co-worker, a friend, or a neighbor, their Resource Coaches are ready to provide the immediate help you need and connect you to useful resources and information that will help you along the way.
i[2]y
www.ImTooYoungForThis.org
i[2]y is proud to be an emerging leader in health resource literacy, patient education and cancer advocacy for the adolescent and young adult survivorship community.
The Central Brain Tumor Registry of the United States (CBTRUS)
www.cbtrus.org
The Central Brain Tumor Registry of the United States (CBTRUS) is a not-for-profit corporation which gathers and disseminates epidemiologic data on primary brain tumors in order to facilitate research and establish awareness of the disease. CBTRUS incidence rates and estimated new cases include all primary malignant and non-malignant tumors of the brain, central nervous system, pineal and pituitary glands, and olfactory tumors of the nasal cavity. This site is an excellent source for comprehensive, statistical data on primary brain tumors.
The Surveillance, Epidemiology, and End Results (SEER)
www.seer.cancer.gov
The SEER Program of the National Cancer Institute is an authoritative source of information on cancer incidence and survival in the United States. CBTRUS works collaboratively with this registry and their collection of data on Primary Brain Tumors. SEER only collects data on Malignant Brain Tumors.
The National Institute of Health (NIH)
www.nih.gov
The NIH provides leadership and direction to programs designed to improve the health of the Nation by conducting and supporting research:
The American Cancer Society (ACS)
www.cancer.org
The ACS is dedicated to helping everyone who faces cancer through research, patient services, early detection, treatment, and education. CBTRUS also works with this registry, but they only collect data on malignant brain tumors.
The International Agency of Research
on Cancer (IARC)
www.iarc.fr
The IARC is part of the World Health Organization; it works to coordinate and conduct research on the causes of human cancer, the mechanisms of carcinogenesis, and to develop scientific strategies for cancer control. CBTRUS also works with this organization that collects data on malignant brain tumors only.
PubMed
www.pubmed.org
PubMed is a service of the National Library of Medicine, includes over 15 million citations from MEDLINE and additional life science journals for biomedical articles back to the 1950's. PubMed includes links to full text articles and other related resources and is an excellent source to look up epidemiological studies on brain tumors and other health issues.
Other Brain Tumor Foundations
The Tug McGraw Foundation
www.tugmcgraw.org
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.
The American Brain Tumor Association
www.abta.org
The American Brain Tumor Association exists to eliminate brain tumors
through research and to meet the needs of brain tumor patients and their
families. They have a wide range of resources available and an especially
helpful "Help with Side Effects" section.
The National Brain Tumor Foundation (NBTF)
www.braintumor.org/patient_info/links/
The NBTF presents a comprehensive and growing list of Internet resources to help you find out more about brain tumor diagnosis, treatments and other organizations providing related information.
The NBTF also has an interactive tour of the brain.
www.braintumor.org/patient_info/surviving/brain_anatomy/index.html
The Brain Tumor Society (BTS)
www.tbts.org
BTS has a specialized brain tumor centers section that is organized by state and also lists centers in Canada.
The Musella Foundation
www.virtualtrials.com
The Musella Foundation has important information on brain tumor treatments and is especially helpful for newly diagnosed patients.
The Brain Tumor Foundation (BTF)
www.braintumorfoundation.org
The Brain Tumor Foundation (BTF) guides and supports patients and families during the turbulent times when their lives are touched by a brain tumor by offering support groups, medical referrals and peer matching programs such as Phone-a-Friend. BTF also seeks to raise awareness about the need for the early detection of brain tumors and recently launched a ground-breaking program called The Road to Early Detection.
Brain Tumor Treatment Centers
The University of Pennsylvania's Penn Neurological Institute
www.pennhealth.com/neuro/
The University of Pennsylvania has a history of excellence in the treatment of neurological diseases dating back to the establishment of the Department of Neurology in 1874. U.S. News and World Report ranked the Hospital of the University of Pennsylvania highest in the region for medical and surgical treatment of neurological disorders. The Penn Neurological Institute provides comprehensive medical and surgical care for people with disorders of the brain, spinal cord, and peripheral nervous system.
"Kelly had her surgery at the Hospital of the University of Pennsylvania
with Dr. Donald O'Rourke.
We can't thank Dr. O'Rourke enough for his outstanding medical care and the
tremendous emotional support he provided to Kelly and her family. Not
only is Dr. O'Rourke a superb
doctor, he is also one of the kindest human beings we have ever met.
Both Kelly and Chris consider Dr. O'Rourke more than just a doctor - they also
consider him a friend.That is why we are proud that he has agreed to be a part
of the Foundation's Medical Advisory Board ."
NewYork -Presbyterian Hospital
www.nyp.org
NewYork-Presbyterian Hospital is one of the most comprehensive university hospitals in the world, with leading specialists in every field of medicine. It is composed of two renowned medical centers, NewYork-Presbyterian Hospital/Columbia University Medical Center and NewYork-Presbyterian Hospital/Weill Cornell Medical Center, and affiliated with two Ivy League medical institutions, Columbia University College of Physicians & Surgeons and Weill Medical College of Cornell University. NewYork-Presbyterian Hospital is ranked higher in more specialties than any other hospital in the New York area by U.S.News & World Report (TM).
"Dr. Susan Pannullo consulted
with Kelly and her family extensively and also administered Kelly's Temodar
chemotherapy treatments. She is not only one of the most knowledgeable doctors
in this field, but she is also
one of the most wonderful human beings we have ever met. There is no question
that she made a huge impact on Kelly's life. That is why we are proud that
she has agreed to be a part of the Foundation's Medical Advisory Board ."
The Johns Hopkins Hospital
www.hopkinsmedicine.org/organizations/JHHospital
Rated best hospital in the nation year after year for excellence in every specialty,
this flagship of Hopkins Medicine includes such renowned centers as the Brady
Urological Institute, the Wilmer Eye Institute, the Sidney Kimmel Comprehensive
Cancer Center and the Johns Hopkins Children's Center. A treatment magnet for
patients from around the world, The Johns Hopkins Hospital also provides more
charity care than any other hospital in Baltimore.
"Although she never received treatment at Johns Hopkins,
Kelly visited
this center when her tumor grew back in June of 2004 and everyone
there was extremely helpful and accommodating."
The Brain Tumor Center at Duke
cancer.duke.edu/btc
The Brain Tumor Center at Duke in Durham, North Carolina, is dedicated to the treatment and cure of brain and/or spinal cord tumors in children and adults and to provide the resources and support necessary for patients and their families to meet the challenges of living with a brain tumor.
"Although she never received treatment at Duke, Kelly visited this center when her tumor grew back in June of 2004 and everyone there was extremely helpful and accommodating."
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