When battling a disease like a brain tumor, the information you acquire can greatly determine your decisions and the treatment route you choose to take. Below is a list of useful links that will provide you with information when you are looking for answers and need additional resources.
Our intention is not to list all of the links we can find, but to list the ones we benefited from the most. You will find links for support groups and other emotional support tools in the "Emotional Resources" section. In addition, you will find useful links related to brain tumor statistics on the "Brain Tumor Facts" and "Useful Links" section.
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 Delaware Academy of Medicine
www.delamed.org
"The Delaware Academy of Medicine is a private, non-profit organization founded in 1930. They promote professional and lay health education, maintain a medical library and archives, and provide a meeting place for the medical and dental professions and related organizations."
For people who have no or limited access to the Internet, this organization is a great resource. Their services help you save time and effort in finding the health information you need. They provide a broad range of information and educational services to the public and to medical and dental professionals, free of charge!
Nutritional Solutions
www.nutritional-solutions.net
Maximize your cancer therapy with nourishing foods, nutrients and herbs that enhance the efficacy of your surgery, radiation and/or chemotherapy treatments, while safely reducing their toxic side effects.
"Kelly's family and friends owe so much to Dr. Jeanne Wallace of Nutritional Solutions. There were so many dietary requirements that we weren't informed about until we connected with her. The information, products, and EXCELLENT consultation she provided greatly increased Kelly's quality of life, and helped everyone close to Kelly better understand what she was going through and the essential nutritional tools necessary to fight this dreaded disease."
Henry Dreher
www.henrydreher.com
Henry Dreher is a New York-based health and medical writer specializing in mind-body medicine, integrative medicine, integrative cancer therapies, and motivational and spiritual growth. He also directs CancerGuide Consultations, which provides counseling to cancer patients on their options in both conventional and complementary therapies. His site has information on his background, books, articles, and additional resources.
"Henry Dreher was a great assistance to Kelly and her family during her battle."
Bryn Mawr Rehabilitation Hospital
www.mainlinehealth.org/br/article_614.asp
The Bryn Mawr Rehabilitation Hospital is dedicated to serving individuals
and their families whose lives can be enhanced through physical or cognitive
rehabilitation. They continually strive for excellence by providing care
and services that are valued by those they serve and by contributing to
the community through education, research and prevention of disability.
"Kelly Heinz-Grundner made tremendous progress at the Bryn Mawr facility after her operation and she always spoke very highly of her time there. They have an amazing facility and we encourage you to look at the resources they have to offer. Increasing Kelly's physical strength lifted her spirits and equipped her with important tools to fight her disease."
Christiana Care Physical Therapy
www.christianacare.org
Christiana Care Physical Therapy Department focuses on putting the patient's needs first. They are committed to providing one-on-one, hands-on treatment. Physical Therapy was one of the most beneficial aspects of Kelly's overall treatment. After her surgery, Kelly was paralyzed on the majority of her left side.
"Physical Therapy is crucial, and we were so fortunate to have found this wonderful group. They made an enormous impact on Kelly and her physical and emotional progress."
Other Brain Tumor Organizations
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 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.
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 Brain Tumor Society
www.tbts.org
The Brain Tumor Society offers an extensive glossary of terms related to Brain Tumors and Cancer. It is also alphabetically listed so it is easy to navigate to the words you need to find.
The National Brain Tumor Foundation
www.braintumor.org
The National Brain Tumor Foundation is a nationwide, non-profit organization serving people whose lives are affected by brain tumors. They are dedicated to promoting a cure for brain tumors, improving the quality of life and giving hope to the brain tumor community by funding meaningful research and providing patient resources, timely information and education. They send out a great newsletter and have an excellent link library.
The Healing Exchange BRAIN TRUST (T.H.E. BRAIN TRUST)
www.braintrust.org
T.H.E. BRAIN TRUST helps people communicate about brain tumors and related conditions via the Internet to promote a healing exchange of information and support. The mission of T.H.E. BRAIN TRUST is to improve quality of life for people living with brain tumors and related conditions, today! They run more than a dozen online support groups and distribute over 300,000 emails weekly. They serve over 2,200 people through their groups daily. This is a great networking opportunity for patients, family and friends, and professionals.
The Tim & Tom Gullikson Foundation
www.gulliksonfoundation.org
The Tim & Tom Gullikson Foundation assists
brain-tumor patients and their families in managing the physical,
emotional and social challenges
presented by the illness.
The Brain
Tumor Action Network
www.btan.org
The Brain Tumor Action Network was established to bring awareness to the
general public about brain tumors and to educate and empower brain tumor
survivors, their families and friends. They are very active in Brain Tumor
Advocacy and taking political and personal action to make a difference.
Have a Chance
www.haveachance.org/
Have A Chance is a not-for-profit organization dedicated to helping individuals and families impacted by a brain tumor find the most appropriate and innovative therapies. Have A Chance is committed to researching treatments that touch on the four elements of healing: conventional, alternative, spiritual and psychological.
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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