Helpful Resources

Meet Lauren - Beyond the Cure Scholarship recipient

Helpful Resources

Meet Lauren - Beyond the Cure Scholarship recipient

Advocacy and Legislation

Alliance for Childhood Cancer
The ACC includes national patient-advocate groups as well as professional medical and scientific organizations. They collaborate to advance research and policies to prevent cancer.

American Society of Clinical Oncology
ASCO in Action provides the latest news and analysis related to critical policy, updates on ongoing advocacy efforts, and opportunities to take action.

Children’s Cancer Cause
CCC works to ensure that the needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.

Triage Cancer
This organization provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through eventsmaterials, and resources.  They also advocate for health care, finances, insurance, employment, and consumer rights.

 

Camps

Children’s Oncology Camping Association, International
The COCA-I website helps connect children and families to appropriate camps through their interactive map that provides camp locations, contact information and activities.

Kids Camp
This website lists oncology camps by region and state.

Clinical Trials

CenterWatch
This comprehensive website offers information on government and pharmaceutical company sponsored clinical trials, as well as information on newly approved drugs.

Children’s Oncology Group
This website offers information about clinical trials and the Children’s Oncology Group, a network of hospitals that unite researchers at more than 200 leading children’s hospitals, universities, and cancer centers.

NCI
Information on understanding and finding clinical trials. The site contains information on more than 12,000+ open clinical trials.

 

Disabilities

Americans with Disabilities Act (ADA)
This site provides information on The Americans with Disabilities Act and current issues regarding disability rights.

Clearinghouse on Disability Information
The Clearinghouse provides information to people with disabilities by doing research and providing documents in response to inquiries regarding federal funding for disability-related programs.

EDUMED
Guide for students with disabilities to learn about careers in healthcare, overcome common school/workplace challenges and learn about disability rights and disclosure.

College Accessibility for Students with Disabilities
This organization has compiled a list of college scholarships and financial aid for students with learning disabilities, ADD/ADHD , psychiatric disabilities, visual or hearing impairments and physical disabilities.

National Center for Learning Disabilities
Conducts educational programs, provides services, and recommends instructional activities to aid those with learning disabilities.

National Disability Rights Network
Through training, technical assistance, legal support, and legislative advocacy, they work to create a society in which people with disabilities are afforded equal opportunity and full participation.

National Rehabilitation Information Center
It provides direct, personal and high-quality information to the disability and rehabilitation community. This website offers online publications, searchable databases and timely reference and referral data.

Education

American Cancer Society
ACS provides comprehensive information about childhood cancer.  Here you can find statistics, treatment information, survivorship information and much more.

The Brain Bodega
This education services company provides 1:1, holistic, academic tutoring and coaching, online so children can thrive in school. They provide a non-profit discount so more pediatric oncology patients can benefit from their services.

Children’s Defense Fund
Its “Leave No Child Behind” mission is to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start, and a Moral Start in life and successful passage to adulthood.

Exceptional Lives
This organization guides families and providers caring for children with disabilities by offering information, advocacy and skill-building tools, and connections to other caregivers.

National Center for Learning Disabilities
Conducts educational programs, provides services, and recommends instructional activities to aid those with learning disabilities.

Emotional Support

The National Children’s Cancer Society Childhood Cancer Support Group
Private Facebook group that provides a compassionate and supportive environment for childhood cancer survivors and their parents/guardians. The group provides a supportive environment to connect with peers, share tips/resources and provide or receive encouragement.

American Cancer Society
A community of online survivors and their families with both chats and a message board. The community consists of adult and childhood cancer survivors.

Bone Marrow & Cancer Foundation
CancerBuddy is a free peer support smartphone app for iOS and Android devices that helps patients, survivors, and caregivers find resources, emotional support, medical information, and a new community of peers going through similar experiences within their cancer hospital, city, or state.

Cancer Care
This site has many online professionally moderated forums for people living with cancer and their partners.

CaringBridge
This website connects family and friends during a health crisis. It can ease the burden of keeping loved ones updated, while also providing a way for them to send their love and encouragement.

Cancer Support Community
This website has professionally mentored online support groups as well as a discussion board.

Imerman Angels
This group provides one-on-one cancer support: connecting cancer fighters, survivors and caregivers. They can partner a person fighting cancer with someone who has beaten the same type of cancer.

Employment

Americans with Disabilities Act (ADA)
Information on The Americans with Disabilities Act and current issues regarding disability rights.

Equal Employment Opportunities Commission
Information about EEO Laws, how to file a discrimination charge and statistical information.

Job Accommodation Network
Provides free information on how employers can accommodate people with disabilities.

O*NET
This website has an interactive application for exploring occupations with accommodation features to assist in counseling people with disabilities.

Financial Support

The National Children’s Cancer Society
NCCS has a Transportation Assistance Fund for travel costs associated with a child’s cancer treatment.  The Emergency Assistance Fund helps with living expenses while a child is hospitalized for an extended time.

Alex’s Lemonade Stand
Their Travel Fund helps families with travel expenses such as gas, airfare and lodging.

American Cancer Society
The site provides a resource search engine based on your zip code.

B+ Foundation
The Foundation provides grants to minimize the financial hardship that is directly attributable to the child’s illness.

Cancer Care
Their financial assistance program provides help with treatment-related costs, such as transportation, home care and child care.  Their co-payment assistance fund assists with the co-payments for prescribed treatments.

Clayton Dabney
They provide anonymous assistance to financially struggling families with children in the final stages of terminal cancer, allowing them to create everlasting memories with their child.

Family Reach
Provides financial education, financial planning, resource navigation, and emergency relief funds to patients and caregivers facing a cancer diagnosis.

Good Days
They offer financial assistance for co-pay’s, travel to medical appointments, medical insurance premiums and diagnostic testing.

HealthWell Foundation
This organization helps with copays, premiums, deductibles and out-of-pocket expenses for supplies, supplements and surgeries.

Lazarex Cancer Foundation
If you are a cancer patient who needs help identifying clinical trial options or financial assistance to attend a clinical trial they have patient navigator’s to help and financial assistance with transportation and lodging.

Leukemia and Lymphoma Society
LLS has a co-pay assistance program, patient aid program, travel assistance program and urgent need program.

Live Like Bella
This organization assist’s families whose children are battling cancer with financial support for medical copays, gas, groceries, utilities, memorial support and more.

Oracle Health Foundation
Assists children with health problems by providing financial assistance for treatment, equipment, displacement and vehicle modifications.

Pinky Swear Foundation
Offers financial assistance for car payment, gas, grocery, utility bills and housing support.

Ronald McDonald House Charities
This site has guidelines and Ronald McDonald House locations across the country.

Tyler Robinson Foundation
They have a financial relief grant for household bills, treatment travel grant for hotel and travel to medical treatment, family fun grants to celebrate special occasions, a path to heaven grant and an emergency fund.

United Healthcare Children’s Foundation
This foundation accepts grant applications from families who need financial help to cover the cost of child medical services such as speech, physical or occupational therapy, prescriptions, and medical equipment such as wheelchairs, orthotics and hearing aids.

Wigs for Kids
This nonprofit organization provides wigs and also accepts hair donations.

Verna’s Purse
Offers financial assistance for fertility preservation services to patients with economic challenges who are facing fertility threatening treatment.

Grief

Bereaved Parents of the USA
This organization offers support, understanding, compassion, and hope especially to newly bereaved parents, grandparents, and siblings. It provides publications and gatherings and has chapters throughout the country.

M.I.S.S. Mothers in Sympathy and Support
This site has inspirational poetry, articles and information for professionals. It also offers families a way to communicate their story and share with others who are also suffering through grief.

The Compassionate Friends
This organization offers brochures, conferences, sibling chats, cyber friends and pen pals to people suffering the loss of a child.

Health Insurance

Healthcare.gov
This site provides information on insurance options, quality care and information on new healthcare reform.

National Association of Insurance Commissioners
Provides information and contacts on state health insurance programs.

Patient Advocate Foundation
They offer patients free assistance in mediating with insurance companies to assure access to care, maintenance of employment and preservation of their financial stability.

Health and Prevention

American Heart Association
This is a great resource for getting healthy and provides information on nutrition, physical activity, weight management, stress management and quitting smoking.

American Institute for Cancer Research
This website is dedicated to diet and its relationship to cancer and cancer prevention.

American Lung Association
Tips on how and why to quit smoking.

Oncolink
This website offers a Reduce My Risk tool to help you learn about factors that affect your personal risk of many types of cancer and – most importantly – what you can do to decrease that risk.

The American Skin Association
The American Skin Association is a leading force in efforts to defeat melanoma, skin cancer and disease. Their mission is to advance research, champion skin health and drive public awareness about skin disease.

 

Medical

American Cancer Society
The site offers a tool to assist in deciding treatment options and questions to ask your doctor. It also contains descriptions and guides for the main forms of cancer treatment.

Bone Marrow & Cancer Foundation
This foundation offers financial assistance, patient navigators, a support line and an Ask the Expert service that connects transplant patients and their families to health care professions.

Childhood Cancer Guides (CCG)
Published books that provide clear explanations of the various types of childhood cancer, descriptions of state-of-the-art treatments for childhood cancers, emotional support for every member of the family and access to helpful resources.

Children’s Oncology Group
Lists all Children’s Oncology Group hospitals, clinical trials and the results post study completion.  There is a Family Handbook, survivorship guidelines and supportive care guidelines with reliable information about treatment, support and follow-up care.

Leukemia and Lymphoma Society
The site offers disease and treatment information for leukemia and lymphoma patients and their families. On-site questions and answers.

National Brain Tumor Society
The site offers support and education for brain tumor patients and their families and allows users to e-mail questions to a nurse specializing in brain tumors.

National Cancer Institute
Provides information on clinical trials, cancer statistics, research and other cancer related news.

Parent Voices

Amanda’s Gift: One Family’s Journey Through the Maze of Serious Childhood Illness
Scott MacLellan shares the personal story of his daughter’s childhood cancer journey while providing a practical guide to dealing with debilitating disease in a child.  He discusses how to cope with emotions, handle the daily challenges and find hope in a seemingly desperate situation.

Reclaiming Life: A Guide for Parents of Chronically Ill Children
Maureen Michele is the mother of a childhood cancer survivor and a physician.  She wrote this book about her experiences to provide other parents with tips to live a full and rewarding life despite a child’s health needs.  This book aims to help parents overcome self-neglect and discusses the strength of asking for help.

Scholarships

Beyond the Cure Ambassador Scholarship Program
The National Children’s Cancer Society awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. Fifty-eight (58) $3,500 scholarships will be awarded each academic year.

CAC2: Coalition Against Childhood Cancer
They offer a survivorship toolkit containing a comprehensive list of scholarships for childhood cancer survivors and patients. 

Cancer for College
They award $5,000 scholarships to provide hope and inspiration to high achieving cancer survivors.

Children’s Cancer Cause
They award $2,000 competitive scholarships to childhood cancer survivors and mentor them towards completing a childhood cancer advocacy project of the scholars choice.

Finaid
Information about college scholarships, loans and other types of financial aid.

National Collegiate Cancer Foundation
$1,000 competitive awards are given based upon financial need, quality of essay and recommendations, displaying a “Will Win” attitude, and overall story of cancer survivorship.

Northwestern Mutual Foundation
They provide twenty-five $5,000 awards to cancer survivors and ten $5,000 awards to siblings of childhood cancer to continue their education and pursue their college dreams.

Patient Advocate Foundation
They award $3,000 competitive scholarships to those diagnosed with and/or been actively treated for a life threatening disease within the past 5 years.

Special Love
Educational scholarships to pediatric cancer patients ages 18-30 from $1,000 to $3,500 to cover the student’s tuition and schools fees.

The SAMFund
They provide financial assistance to cancer survivors between the ages of 21 and 39 as they move forward with their lives after cancer.  Their grants can be used towards tuition, car payments, reconstructive procedures, egg, embryo or sperm storage, rent/mortgage, or one time bill payment.

Survivorship

Beyond The Cure
Here you can find information regarding all aspects of cancer survivorship. A survivor or family member can also create a personalized risk assessment specific to diagnosis and treatment.

Cancer Survivors Network
Members may participate in public and private chat with other cancer survivors.

Childhood Cancer Guides (CCG)
Published books that provide clear explanations of the various types of childhood cancer, descriptions of state-of-the-art treatments for childhood cancers, emotional support for every member of the family and access to helpful resources.

Livestrong
The site explains what treatments may affect fertility, as well as preventative steps to take prior to treatment.

National Coalition for Cancer Survivorship
Their mission is to advocate for quality cancer care for all people touched by cancer. This website lists the national programs related to cancer survivors.

The OncoFertility Consortium
The OncoFertility Consortium provides information on preserving fertility before and during cancer treatment and protecting hormonal health after treatment.

Survivorship Guidelines-COG
This site offers guidelines, screening recommendations, information on long-term follow-up needs and patient education materials for cancer survivors.

Transplant

Bone Marrow & Cancer Foundation
This Foundation offers financial assistance and free support services to bone marrow/stem cell transplant patients and their families.

Children’s Organ Transplant Association
They help children and young adults who need a life-saving transplant by providing fundraising assistance and family support.

National Foundation for Transplants
This organization helps organ and tissue transplant candidates through fundraising and grant programs.

Transportation

Air Care Alliance
This is a nationwide league of humanitarian flying organizations dedicated to offering free flights for patients.

Air Charity Network
This not-for-profit organization flies patients who cannot afford commercial airfare to obtain specialized care.

Compass To Care
They provide financial assistance for travel to cancer treatment.  Travel expenses include airfare, gasoline, lodging, parking fees, taxi, ridesharing and train fare.

Corporate Angel Network
Their sole mission is to help cancer patients access the best possible treatment by arranging free travel to treatment across the country using empty seats on corporate jets.

Mercy Medical Angels
They offer a patient travel helpline, airline travel program, volunteer pilot travel program and ground travel program.

Miracle Flights
They offer commercial plane tickets to medical treatment facilities at no cost to families.

Patient Airlift Services (PALS)
They arrange free air transportation for individuals requiring medical diagnosis, treatment or follow up, as well as compassionate purposes such as oncology camps.

Wish Foundations

Kids Wish Network
Grants wishes for children who are between the ages of 3- 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker.

Make-A-Wish Foundation
Fulfills wishes for children with a life-threatening medical condition who have reached the age of 2 ½ and are younger than 18 at the time of referral.

Sunshine Foundation
Their sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children ages 3-18.