Other Family Support Resources
The needs of pediatric brain tumor patients, survivors, families, and caregivers are vast. To be successfully addressed, they require a community of dedicated individuals and programs. We have prepared the following list of support services offered by other organizations to help you navigate your family’s brain tumor journey. Click a category to see related resources and get started.
If you have questions about a resource we’ve listed or need help finding support for you and your family, email [email protected] or call 800-253-6530 to connect with a member of our Family Support Team today.
Alex’s Lemonade Stand Foundation lists camps focused on siblings of children with cancer.
Camp Make-A-Dream offers cost-free programs to children, teens, young adults, women and families affected by cancer.
Camp Sunshine offers a free retreat to families affected by life-threatening childhood illnesses. The camp has a session that gives families the opportunity to meet other families in similar situations.
The Hole in the Wall Gang provides free camps to seriously ill children and their families.
- Clinical Trials
Clinicaltrials.gov is a registry and results database of clinical trials in all 50 states and in 185 countries.
The National Cancer Institute provides information on how to find and pay for clinical trials and research updates for patients, caregivers and researchers.
- College Scholarships
Cancer for College gives scholarships to cancer survivors who plan to attend or are already enrolled in an accredited college.
FinAid offers many scholarship resources to families affected by cancer.
The National Children’s Cancer Society’s scholarship program Beyond the Cure provides scholarships to survivors of a childhood cancer or high grade anaplastic brain tumor.
The Patient Advocate Foundation’s scholarship program Scholarships for Survivors provides an academic scholarship to survivors of a chronic, life-threatening or debilitating disease within the past five years.
- Educational Resources and Information
The American Childhood Cancer Organization is dedicated to improving the lives of children with cancer and their families.
Cancer.org provides information and helpful links on living with cancer and life after cancer.
The National Cancer Institute’s online dictionary explains the meaning of cancer-related words and medications.
The National Parent Technical Assistance Center Network provides parent centers with innovative technical assistance, current information and educational resources and materials for children with disabilities.
The PACER Center (Parent Advocacy Coalition for Educational Rights) expands opportunities and enhances the quality of life of children and young adults with disabilities and their families.
Wrightslaw provides information about special education law, education law and advocacy for children with disabilities.
- Financial Aid and Insurance Issues
The American Cancer Society offers information on financial issues, sources for help and health insurance management.
CancerCare offers financial assistance for cancer-related costs, including transportation, home care and child care. They also make referrals to other organizations that offer financial support.
Cerner Charitable Foundation provides individual medical grants that cover a wide variety of clinical, equipment, travel & lodging, and vehicle modification costs related to children’s healthcare needs.
Family Voices gives families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families and serve as a trusted resource for health.
Friends4Michael Foundation provides supplementary financial assistance to families, guardians or caregivers with financial needs resulting from expenses from a child’s brain tumor treatment.
Hogs for the Cause provides aid and relief to families for variable expenses and economic burdens that families face while their child is being treated for cancer.
The National Children’s Cancer Society‘s Transportation Assistance Fund provides relief for expenses associated with travel. They also have an emergency fund for families who have a child that has been inpatient for 30 consecutive days or away from home due to treatment for 30 days.
The National Health Law Program protects and advances the health rights of low income and underserved individuals.
The Patient Advocate Foundation provides financial assistance to insured patients to help them pay for prescriptions and treatment.
Supplemental Security Income (SSI) is a federal income program designed to help disabled people with little or no income pay for clothes, food and shelter.
- Grief and Loss
CancerCare offers online and telephone support groups for caregivers and family members of brain tumor patients.
The Compassionate Friends network provides support to families after a child dies.
The Hospice Foundation of America offers information on end-of-life care to professionals, patients and families.
The Solace Tree gives emotional support to grieving children, teens and families.
- Peer-to-Peer Support
The American Childhood Cancer Organization provides 24-hour online peer-to-peer support to connect with other caregivers, participate in online discussion groups and create a personal profile.
The Children’s Brain Tumor Foundation provides peer support programs.
The Coalition Aganist Childhood Cancer’s Family to Family program pairs families together who have faced similar challenges to lean and support each other.
Imerman Angels partners individuals seeking support with someone who is familiar with the experience.
Cancer.net gives survivors information about life after treatment.
The Children’s Oncology Group provides long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancer.
The National Cancer Institute’s Office of Cancer Survivorship Research provides resources on survivorship issues. They are dedicated to the quality of life of survivors by addressing their unique needs.
Angel Flight America arranges free travel for any legitimate, charitable or medically related need. They primarily serve patients to and from the heartland region.
Corporate Angel Network offers free travel to treatment centers across the country to cancer patients using empty seats on corporate jets.
Lifeline Pilots provides free air transportation for financially distressed passengers with medical and humanitarian needs.
The National Patient Travel Center is a helpline that provides information and referrals to all available sources of transportation help.
Patient AirLift Services (PALS) arranges free air transportation for patients and families by utilizing their aviation partners to provide unlimited free flights when care is far from home.
- Other Resources
The Brain Tumor Network provides pediatric navigation services, giving families access to pediatric neuro-oncology navigators who educate, support, and empower families to participate in shared decision-making with their child’s care team.
CancerCare offers support groups and counseling face-to-face (in Connecticut, New Jersey and New York), over the phone and online.
CaringBridge is an online space where families can connect and receive support and hope.
The International Brain Tumour Alliance brings together support, advocacy and information groups for brain tumor patients and caregivers in different countries. It also includes researchers, scientists, clinicians and allied health professionals.
The Locks of Love Foundation provides hairpieces to financially disadvantaged children suffering from long-term medical hair loss.
Lotsa Helping Hands helps families easily organize meals and help from friends and family.
The Make-A-Wish Foundation grants wishes to children with life-threatening medical conditions.
OnlineCounselingProgram.com offers tips for parents and caregivers to support their children while in the hospital.
Ronald McDonald House Charities offers housing for children undergoing medical treatment and additional services at locations across the U.S.
SuperSibs (Alex’s Lemonade Stand Foundation) is a free mailing program dedicated to comforting, encouraging, and empowering siblings during their family’s battle against childhood cancer so they can face the future with courage and hope. It’s offered by Alex’s Lemonade Stand Foundation, one of the leading funders of pediatric cancer research in the U.S. and Canada.