Resources & Affiliations
American Childhood Cancer Organizationacco.org/
American Childhood Cancer Organization (previously Candlelighters) is a national organization that provides programs and services for families of children and adolescents with cancer. It addresses the needs of families through programs that emphasize information, advocacy, and research. It also supports families through affiliate local organizations.
Boston Children's Hospital-Manton Centerwww.childrenshospital.org/research-and-innovation/research/centers/manton-center-for-orphan-disease-research
The Manton Center for Orphan Disease Research at Boston Children's Hospital was created to develop new methods for understanding, diagnosing and treating unusual diseases and to apply this knowledge to make fundamental scientific advances with broad implications for human health. To reach these goals, Children's joined in a partnership with The Manton Foundation to create a center devoted to understanding "orphan diseases" - genetic syndromes, immune system problems, errors of metabolism, neuromuscular disorders and other little-noticed but scientifically important disease processes. In our Center, experts committed to answering critical questions posed by puzzling and difficult diseases can collaborate, multiplying the impact of key medical discoveries and helping children and families facing profound medical challenges
CancerCare is a national organization that provides free, professional support services to anyone affected by cancer: cancer patients, caregivers, children, loved ones, and the bereaved. Its programs include counseling and support groups, education, financial assistance and practical help are provided by professional oncology social workers
Children's Brain Tumor Foundationwww.cbtf.org
The mission of the Children's Brain Tumor Foundation is to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. To support this goal, CBFT programs include a toll-free support hotline, and sharing family experiences through their Family 2 Family Network, as well as through special events.
CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their mission to cure childhood cancer. For parents and families, the website provides specific information and resources for when cancer patients are newly diagnosed, in-treatment, end of treatment and survivorship.
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. Our Mission To Eliminate the Challenges of Rare Disease. We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.
Leukemia & Lymphoma Societywww.leukemia-lymphoma.org/
The Leukemia & Lymphoma Society is dedicated to funding blood cancer research, education and patient services. Its mission is to cure leukemia, lymphoma, Hodgkins disease and myeloma, and to improve the quality of life of patients and their families. Its Information Resource Center provides accurate, current disease information and support.
Maxim Health Carehttps://www.maximhealthcare.com/
Maxim Healthcare Services is an experienced provider of home health, medical staffing, and wellness services. As a full-service healthcare company, Maxim Healthcare Services has extensive experience providing home health, medical staffing, and wellness services in communities nationwide. With 25 years of experience, we are dedicated to providing our patients with quality care and are committed to staffing devoted healthcare professionals in a variety of environments, while remaining focused on compliance. Our commitment to customer service and quality care is what makes Maxim an experienced nationwide provider of home-care, staffing, and wellness services.
National Children's Cancer Societywww.children-cancer.org/
The mission of the National Children's Cancer Society is to provide financial, emotional, educational and medical resources for those in need at every stage of their illness and recovery. They provide financial assistance for medical expenses and household bills, and their affiliated group Beyond the Cure helps survivors address issues such as medical and educational late effects, healthy living and advocacy.
Pediatric Brain Tumor Foundation Scholarship Programwww.pbtfus.org/
The PBTF offers scholarships to students who have survived a central nervous system tumor. Awards are used to cover tuition, fees, and books at any accredited post-secondary institution. The PBTF website contains information on how to apply.
Project Parent Muscular Dystrophywww.parentprojectmd.org/
The relatives of a child with Duchenne can help to ensure his (and his family’s) health and happiness. Parents, siblings, grandparents, and others will find helpful information on our website about care and treatment, and access to the Duchenne community.
Steven Harris MD Lyme Disease Specialistwww.pacificfrontiermedical.com/practioners.php
Steven Harris, M.D. has been in private practice since 2001. Dr Harris is a medical doctor (MD), board certified in Family Practice. His private practice was opened as a sole proprietorship until 2006, after which he formed a California medical corporation, Pacific Since 2001 Dr Harris has focused his practice on the diagnosis and treatment of Lyme disease and other tick-borne co-infections. In his approach to Lyme disease he incorporates strategies found in conventional, functional and complimentary medicine. He believes that there are many effective treatments available to those with chronic and persistent Lyme. Dr Harris has taken a leadership role in lymedisease.org (formerly CALDA -The California Lyme disease Association), a research, patient advocate group which has been largely responsible for spearheding favorable legislation protecting patients rights, expanding Lyme disease awareness and fostering continued public health education. Dr Harris is also an active member of ILADS (The International Lyme and Associated Diseases Society). This is a professional medical society of physicians and scientists which has become the authority on effective treatment for chronic Lyme disease.
The Cord Blood Centerwww.cordbloodbanking.com/cord-blood/
Our goal is to provide information for expectant mothers and families considering cord blood banking - we want to help you find the right option for your loved ones. Whether you choose private banking for the safety of your family, or public banking to help patients in need of a transplant, The Cord Blood Center is committed to giving you relevant, up-to-date information on benefits, pricing and current research for cord blood stem cells." Please contact Jennifer Brooks at email@example.com or visit http://www.cordbloodbanking.com/cord-blood/
Health Insurance and Legal Information
Patient Advocate Foundation Co-Pay Relief Programwww.patientadvocate.org/
The Patient Advocate Foundation Co-Pay Relief Program currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who financially and medically qualify to access pharmaceutical co-payment assistance. The program offers free financial advice and free legal consultation about health insurance.
Jim Dell is an attorney and Certified Financial Planner™ Professional. Previously Jim served as a Naval Flight Officer flying S-3 Viking jet aircraft from the USS Nimitz. He is a veteran of Gulf War I and Operation Southern Watch. After his service, Jim attended the Indiana University School of Law. As an attorney, Jim has practiced in the areas of elder, aviation, estate planning, business, and public interest law. After two years with a law firm, Jim opened the practice Dell & Dell, P.C. in Indianapolis with his wife, Amy, who is also an attorney. In addition to practicing law, Jim has been a flight instructor, vice president of an air charter company, and an airline pilot. He has served on several nonprofit boards, and he received the “Outstanding Guardianship Award” for his pro bono legal service to the poor. After moving back to California in 2007, Jim obtained the CFP® designation. From being inspired at a conference at Rady Children’s Hospital, Jim, Jon, Margot, and Tom founded the Professional Alliance for Children. Jim has a passion for using his experience as an attorney and financial planner in helping families caring for an ill child. He also enjoys his volunteer work at the San Diego Humane Society where he is a “Dog Buddy.” Jim is a member of the Financial Planning Association (FPA), and the state bars of Indiana, Georgia, and California (active). Jim is San Diego FPA’s pro bono “Volunteer of the Year” for 2011
Air Charity Network (formerly Angel Flight America)www.aircharitynetwork.org/
Air Charity Network is made up of independent charity organizations that arrange free air ambulance flights for those patients and families in need.
American Airlines — Miles for Kids in Needwww.aa.com/kids
The Miles for Kids in Need program provides transportation for children and their families, as well as for organizations dedicated to improving the quality of life for children with needs for medical, educational, social services issues and/or for those that heighten public awareness of children's issues. Flights are based on donated air travel miles.
Corporate Angel Networkwww.corpangelnetwork.org/
Corporate Angel Network matches cancer patients in need of travel by arranging free flights using empty seats on corporate planes. Eligibility is open to all cancer patients, bone marrow donors, and bone marrow recipients who are ambulatory and not in need of medical support while traveling.
Mercy Medical Airliftwww.mercymedical.org/
Mercy Medical Airlift's mission is to ensure that no patient in need is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.
Patient Airlift Serviceswww.palservices.org/
Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.
Be the Match
Be the Match contact info 1-800-MARROW2
Blood & Marrow Transplant Information Networkwww.bmtinfonet.org/
This site provides resource information for transplant centers by disease or type of marrow transplant needed.
The DKMS mission is to save lives by recruiting bone marrow donors for leukemia patients. It is the largest bone marrow donor center in the world with over 2 million registered donors.
National Cancer Institutewww.cancer.gov/
The NCI website includes current and comprehensive cancer information from the US government's principal agency for cancer research.
National Foundation for Transplantswww.transplants.org/
NFT provides financial assistance to transplant patients in all 50 states, plus U.S. territories.
National Transplant Assistance Fundwww.ntafund.org/
NTAF provides financial assistance for uninsured medical expenses related to transplantation (solid organ, bone marrow, stem cell or tissue) and catastrophic injury (spinal cord or traumatic brain).
The Bone Marrow Foundationwww.bonemarrow.org/
The Bone Marrow Foundation mission is to improve the quality of life for children and adults who are undergoing transplantation as a life saving treatment for leukemia, Hodgkin's and non-Hodgkin's lymphomas, multiple myeloma, aplastic anemia, severe combined immunodeficiency, neuroblastoma and many other cancers and genetic disorders. The services are free to patients and their families and there is no limit on type of disease, transplant or age range.
This U.S. government website has direct links to clinical trial information.
Musella Foundation for Brain Tumor Researchwww.virtualtrials.com/
This site includes clinical trial information for patients with brain tumors.
For Children & Young Adults On-line Connections
Helps children with chronic, life-threatening illnesses or disabilities by connecting them to medical information and resources such as financial assistance, camps, support groups, dental assistance, childcare, and health services.
CaringBridge provides free, personal websites available 24/7 that connect family and friends during a serious illness. The websites are easy to create and add to with health updates, photos and visitors can leave messages of support in the guestbook. It helps ease the burden of keeping family and friends informed.
Group Loop: Teens. Talk. Cancer. Online.www.grouploop.org/
This site is geared to supporting teens with cancer. Through an on-line database, teenagers with cancer can connect with other teens based on such criteria as age, location and diagnosis.
I'm Too Young For This / Stupid Cancerwww.i2y.org/
The mission of I'm Too Young For This is to improve both survival rates and quality of life for young adults living with, through and beyond cancer. Its goals include empowering young adults affected by cancer by reducing late detection, ending their isolation by providing a community of young adults with cancer, improving quality of life and providing meaningful survivorship.
Founded by a community of young adults with cancer, this website facilitates young adult connections by providing peer support and empowers them to access the resources geared to their unique needs and issues.
Songs of Lovewww.songsoflove.org/
The Songs of Love Foundation website creates free, personalized, original songs to uplift children and teens facing tough medical, physical or emotional challenges. Each CD is professionally produced with lyrics containing the child's name and references individual favorite activities, pets, people, etc.
Supersibs provides education, awareness and understanding for siblings of children with cancer. The needs of siblings are so often overlooked and the Supersibs programs are specifically designed for siblings to help them cope, understand and learn about their brothers and sisters diagnosed with cancer.
Teens Living with Cancerwww.teenslivingwithcancer.org/
This organization offers information and resources about cancer, treatments, and a support network presented by teens for teens.
Andre Sobel River of Life Foundationwww.andreriveroflife.org/
Andre Sobel Award: Young Cancer Survivors' Essay The Andre Sobel River of Life Foundation offers an annual Essay Award to young survivors of catastrophic illness as a chance to express their personal experiences. A $5,000 cash award is presented to the first place winner with additional prizes going to the second and third place winners. Participants must be between the ages of 12 and 21.
Cancer Survivors Fundwww.cancersurvivorsfund.org/
This fund provides scholarships to young adults to enable them to start and/or continue their college education. The Fund awards four levels of scholarships to augment the expenses associated with the college educations of young cancer survivors. A selection committee chooses scholarship recipients based on the applicants' personal hardships, assessing their financial and emotional needs as well as their academic qualifications.
Patient Advocate Foundationwww.patientadvocate.org/
The Patient Advocate Foundation scholarships provide support to individuals, under the age 25, that are or have been diagnosed with cancer or a critical or life threatening disease. The award amount of $3,000 can be used to defray tuition and other costs. Scholarship requirements and application can be found on the website.
SuperSibs! Scholarship Programswww.supersibs.org/
Super Sibs college tuition assistance scholarships provide financial assistance to high school seniors who are siblings of a child who has or had cancer. Applicants are required to articulate how being the sibling of a brother or sister with cancer has impacted their lives and how they will apply this learning to make a difference in the future. Application requirements are found on the website.
The Ulman Fund for Young Adultswww.ulmanfund.org/
The Ulman Cancer Fund provides grants to young adults to assist them in continuing their education after being affected by cancer through their own diagnosis or the diagnosis of a family member.
Beyond the Curewww.beyondthecure.org/
Beyond the Cure was created for survivors of childhood cancer. Current research indicates that over two-thirds of childhood cancer survivors experience at least one "late effect" as a result of their disease or treatment. Its mission is to help childhood cancer survivors integrate the cancer experience into their new life as survivors and successfully handle the challenges that are ahead of them and to celebrate survivorship.
Cancer Survivors Networkwww.csn.cancer.org/
Sponsored by the American Cancer Society, the Cancer Survivors Network helps cancer survivors celebrate and share their lives and their own stories through discussion boards, chat rooms, blogs, audios, photos and resources.
Cancer Survivors Onlinewww.cancersurvivors.org/
Cancer Survivors Online offers cancer information, resources, and support. It is designed for cancer patients, families, friends, and professionals. The site was created and is maintained by cancer survivors who share their knowledge and experiences.
Camp Ronald McDonaldwww.campronaldmcdonald.org/
Nestled in the San Jacinto Mountains of Southern California provides year round experiences that support families, patients, and siblings. 310-473-0351
First Descents is an outdoor program for young adults whose mission is to address the emotional effects of cancer by empowering them to regain control of their lives. Young adults experience whitewater kayaking and other challenging adventure sports in a safe, fun and supportive environment in an effort to boost their self-confidence.
Cherished Creations — Wish Requestswww.cherishedcreations.com/
Cherished Creations grants wish requests for seriously-ill children up to age 21 and have included trips to Disney World; celebrity meet-and greets; Broadway shows and concert tickets with limousine service; computer systems; and shopping sprees.
The Make-A-Wish Foundation grants the wishes of children with a life-threatening medical condition. Since 1980, Make-A-Wish has granted the wishes of more than 174,000 children around the world and currently has 65 chapters in the US.
Chitra Bhakta MDwww.ocimc.com
Specialist in Lyme Disease-Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostics tests are not yet available which leaves many patients and physicians alike relying on the so call tell tale signs of the Lyme Disease. Lyme Disease is often referred to as the "great imitator" because it mimics other conditions often causing patients to suffer a complicated maze of doctors in search of appropriate treatment.
Bastyr University California in San Diego is the state's first and only accredited institution of naturopathic medicine, offering a rigorous science-based doctoral degree program. Their clinic of Naturapathic Medicine emphasizes disease prevention, the body's inherent ability to heal and the use of natural therapies. Naturopathic Doctors blend centuries-old knowledge with current scientific research to help patients achieve whole-person wellness. California is one of 16 states to license NDs as primary care doctors. Areas of specialty: Accupuncture, Nutritional Counseling, Chinese herbal medicine, Physical medicine, Homeopathy, Naturopathic medicine, Natural products and Chinese herbal dispensaries.
Biodynamic Wellness-Certified Nutritionist
Genesis Health Systemsgenesishealthsystems.org/
An Integrative Cancer and Medical Treatment Center
Natural Medicine Acupuncture
San Diego Center Hyperbaric Therapywww.sdc4hbot.com/
The HBOT procedure transports oxygen through out the body tissues and increases the oxygen entering the blood stream. By increasing the oxygen under controlled pressure the oxygen can reach tissue, bone, plasma, the central nervous system and the lymph that are not normally accessible to the red blood cells.
Todd Thoring NDwww.pacificnaturalmedicalcentre.com/
Dr Todd Thoring, graduated in 1999 from the well respected John Bastyr University in Seattle, Washington. I am currently licensed in my native State of California to practice primary care as a Naturopathic Doctor. Since 2002,1 have been committed to the integrative treatment of tick born infections and chronic degenerative disease. This specialty was not intended yet rather brought about by a single patient with the diagnosis of chronic Lyme Disease which in turn prompted me to reevaluate and test many other patients revealing a much greater problem than I was taught. This eye-opening pivitol patient changed my practice forever, as well as made me realize how little I knew about this complex, elusive and devastating disease. I then decided to embrace this calling and learn as much as I could through ILADS, CALDA, patients, conferences and preceptorships with the leading Lyme disease experts. Over last several years, it has been my goal to make a positive contribution to the community through incorporating experience, naturopathic theory, research and traditional use of herbal medicine from around the world to produce sophisticated and reliable formulations. The most important thing I have learned is that we, doctors and patients, need all the help we can get while using the best medicine for each individual patient for that given period of time whether that medicine is natural or not. It is my belief that we need to be dynamic and attentive in our treatments while focusing on the patient as well as the disease. When it comes to treating patients with prescription antibiotics, it is only one piece of greater comprehensive treatment plan. I believe that antibiotics will not be the treatment modality that will take patients to the finish line of healing, but rather their innate healing response supported by a strong immune, endocrine/hormone, and detoxification system. I am dedicated to the principles of Naturopathic medicine in my clinical practice and product formulations.
UCSD Hyperbaric Medicine and Treatment Centerhealth.ucsd.edu/specialties/hyperbaric/Pages/default.aspx
The UC San Diego Hyperbaric Medicine Center treats patients in accordance with the Undersea and Hyperbaric Medical Society guidelines for the use of hyperbaric oxygen therapy (HBOT). In addition, we offer a full range of comprehensive wound care services.
Grief Support/End of Life Support/Palliative Care
Comfort Zone Campwww.comfortzonecamp.org/
Comfort Zone Camp is the national's largest bereavement camp. Comfort Zone Camps are offered free of charge to children ages 7-17 who have experienced the death of a parent, sibling, or primary caregiver. The camps are held year-round in California, Massachusetts, New Jersey, and Virginia. Comfort Zone Camps create an environment where grieving children can have fun and break the isolation death often brings, while learning valuable coping skills for their daily lives.
Coping With Change After Losswww.cancer.net/coping/grief-and-bereavement/coping-change-after-loss
The death of a loved one creates many changes for surviving family members. These range from changes in household routines to changes in priorities or plans for the future. The process of adapting and reacting to new life situations may take months or years.
Hospice of North Coastwww.hospicenorthcoast.org/
Serving all of San Diego, North County area.
Lifeworks Ministry: Therapeutic Inner Healing
Psalm 23 Ministry
Research shows that religion plays a vital role in helping people cope with cancer, both mentally and physically. The psychological benefits of prayer include: reduction of stress and anxiety; promotion of a more positive outlook; and a strengthening of the will to live.
San Diego Hospice and the Institute of Palliative Care:www.sdhopice.org/
Serving San Diego County, California
Talking to Chilrden About Deathwww.hospicenet.org/html/talking.html
If you are concerned about discussing death with your children, you’re not alone. Many of us hesitate to talk about death, particularly with youngsters. But death is an inescapable fact of life. We must deal with it and so must our children; if we are to help them, we must let them know it’s okay to talk about it.
The Elizabeth Hospicewww.elizabethhospice.org/
Serving North County San Diego area