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Brain Cancer Resources

Brain Cancer

Glioblastoma | DIPG | DMG

A brain cancer diagnosis brings complex challenges for patients and their families. Access to reliable information and support is essential at every stage of the journey. This resource page provides trusted, reliable, information. Whether you are seeking the latest treatment options or support for daily challenges, these resources can help you navigate the path forward.

Brain Tumor Network

Offer support in various aspects of dealing with brain cancer, including treatment options and coping
strategies. 

Musella Foundation

Offer a wide range of support, Including emotional and financial support, facilitating educational resources, advocating for patients’ needs, and striving to raise funds for groundbreaking brain
tumor research.

National Brain Tumor Society

Offer information and support to patients and caregivers, including hosting special events and annual
gatherings that bring together patients, families, healthcare professionals, and scientists.

American Cancer Society

Provide detailed cancer information, resources for support, and guidance on prevention and treatment.

National Cancer Institute

Offer comprehensive cancer information, including types, treatments, and research.

Ivy Brain Tumor Center

Focus on offering state-of-the-art clinical trials for patients with aggressive brain tumors.

Tisch Cancer Center

Offer a comprehensive approach to cancer care, integrating cutting-edge research with exceptional patient care.

UCSF Brain Program

Offer a wide range of services, including neurosurgery, radiation therapy, and neuro-oncology, as well as support services for patients and their families.

Cancer Care Brain Support Group

Offer online support group for people facing brain cancer.

WiTT

WiTT combines the simplicity of a wedding registry with your personalized needs, making it easy to ASK for and RECEIVE help.

Caregiver Dashboard

Developed by a caregiver to help gauge communication, disease status, and emotional well-being of you and your loved one.

Cancer Support Community

Offer comprehensive cancer information, including types, treatments, and research.

Cancer Care

Workshops and online support groups. Emotional resource education.

Living with Cancer

Resources for each stage of the cancer journey.

Cancer Support Community

Local and online support. A patient and caregiver favorite! 

Imerman Angels

Offer comprehensive cancer information, including types, treatments, and research.

Oncology Nutrition

Offer practical tips and recipes on eating well at all stages of the cancer journey. 

ELLICSR Kitchen

Recipes by meal type and side effects. Videos and more.

Cancer Nutrition Consortium

Promote a better understanding of the importance of food and nutrition to positive medical outcomes of cancer treatment and recovery.

Rebecca Katz Kitchen

Recipes and art from the author of the Cancer Fighting Kitchen.

Cook for Your Life

Evidence-based resources with over 1000 recipes, hundreds of nutrition and health articles, and how-to cooking videos.

Good RX

Use Good Rx to find current prices and discounts at a pharmacy near you.

Family Reach

Family Reach has a database listing places to apply for financial assistance including cancer-specific funding. 

Patient Advocate Foundation

Provide co-pay assistance programs for people with insurance and high co-pays for medications.

Cancer Financial Assistance Coalition

A coalition of organizations helping cancer patients manage their financial challenges.

Triage Cancer

Offer a variety of cancer-related legal information, including health insurance, rights at work, disability insurance, finances, estate planning, and medical decision making. 

Cancer and Careers

Empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events.

Law Help

Help low- and moderate-income people find free legal aid programs in their communities and answers to questions about their legal rights. Use the state list on their website to find help related to housing, work, family, bankruptcy, disability, immigration and other topics. 

Medical-Legal Partnership

Search for local programs through their MLP Network. 

 

 

OncoLink

Information and inspiration concerning the life-long health care, emotional, and social needs of cancer survivors. 

Living with Cancer

Information on life after cancer, long-term side effects, and living with cancer while receiving long-term treatment. 

Cancer Survivorship Checklist

A simple, straightforward tool patients and caregivers can use as a guide for information critical to their care wherever they are on the cancer care continuum.

Cancer Survivorship

Offer patient and caregiver stories from patients like you. 

The information provided by Cancer Help Desk is not a substitute for medical advice, diagnosis, treatment, or other health care services. Always seek the advice of your physician or other qualified healthcare provider and talk with your healthcare provider about any questions you may have.

Cancer Help Desk is a qualified 501(c)(3) tax-exempt organization and all donations are tax deductible to the fullest extent allowed by tax laws.

Tax Identification Number: 92-3967197.

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Pathways to Precision: Improving Clinical Trial Access in Oncology Settings

Goal

Seamlessly integrate with an organization’s existing initiatives to strengthen connections between oncology institutions and the community they serve.

Overview

Biomarker testing is the foundation of precision oncology, yet over 60% of patients do not receive tumor testing, potentially limiting their personalized options. Furthermore, only 5-7% of patients access emerging therapies available in clinical trials. 

Patient access to these vital services can be hindered by a lack of understanding of the utility of biomarker testing, and clinical trial participation.

This pilot aims to collaboratively develop solutions to bridge such critical gaps, enhance patient education, and expand access to clinical trials, while supporting healthcare providers in delivering precision oncology care.

Solutions will be dependent on oncology clinics and programs’ KPIs (key process indicators) and goals.

 

 

Advancing Precision Medicine: Training Health Workers in Biomarkers and  Clinical Trials

Goal

Enhance its existing patient support services by providing specialized oncology education and expert clinical support.

Overview

As cancer treatment continues to evolve, personalized care decisions—such as biomarker testing, targeted therapies, and clinical trial participation—are becoming increasingly important. However, understanding these complex options can be overwhelming for both patients and those who support them.

Through this partnership, Cancer Help Desk will serve as an on-demand educational resource that delivers concise, digestible learning modules that equip community healthcare workers with the tools they need to confidently introduce advanced cancer care concepts. This initiative ensures that individuals facing cancer receive the most relevant, up-to-date information about their treatment and care options, ultimately empowering them to make informed, life-changing decisions.

Additionally, this collaboration will allow us to gather initial data on the impact of oncology education in community-based support settings. The insights gained will provide a foundation for future funding opportunities to expand and scale this initiative, ensuring even greater access to expert-driven cancer care.

Deborah Pappas is a seasoned banking professional with over 30 years of experience in commercial lending and more than a decade specializing in cash and treasury management tools. Her extensive expertise enables her to deliver tailored financial solutions to successful individuals, their businesses, and families. Deborah has a deep understanding of her clients’ unique needs, particularly those of closely held businesses, non-profits, and affluent individuals.  She had the opportunity to serve on several non-profit boards.  During her service in those organizations, she often worked as a member of Finance, Audit and Executive Board Committees.  She found being involved in the non-profit organizations gave her learning opportunities she never would have had otherwise.

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Crafting Survival

Crafting Survival is packed with gripping real-life stories, expert insights, and powerful lessons. We will hear from real people who have faced some of life's toughest challenges and people who have great knowledge to help us craft our survival.

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Caitlan is a Biomedical Scientist with 6+ years of hands-on expertise in cell signaling and infectious disease, with a particular focus on cancer biology. She received her PhD from the University of Texas Medical Branch and made significant contributions to scientific literature, shedding light on crucial aspects of bacterial influence on cell signaling pathways that induce tumorigenesis. Her research has revealed key insights into the role of pathogens in modulating signaling processes that control cell fate and contribute to the initiation and progression of cell proliferation and tumorigenesis. Joining Cancer Help Desk allows Caitlan to share her scientific expertise with patients, caregivers, and anyone dealing with cancer. Caitlan has been personally impacted by cancer through supporting some of her closest family members during their cancer diagnosis.

Karena Kosco, PhD, has over 15 years of experience working in the biotechnology industry. Most recently she has focused on the development and validation of molecular diagnostic tests for oncology.  With this experience, she has gained a broad understanding of key oncology biomarkers, their importance in personalized medicine, and the selection of appropriate targeted therapies. Understanding the genetic alterations driving tumor growth has always been one of her primary professional interests. Joining Cancer Help Desk enables Karena to apply her scientific expertise in biomarker testing to directly help patients understand their options. Karena earned her B.S. in Chemistry (cum laude) at Rensselaer Polytechnic Institute and her PhD in Biochemistry, Molecular, and Cellular Biology from Cornell University.

Shelley has 40+ years of accounting and finance experience for both nonprofit and for-profit organizations. For the past 15 years, she supported the nonprofit community as CFO/Director of Finance/COO for organizations including Cancer Commons, TED, Palo Alto Art Center Foundation, Community School of Music and Arts, and Vista Center for the Blind and Visually Impaired. Shelley brings expertise in analysis, advice, and guidance regarding operation and strategic issues and works collaboratively to strengthen organizational effectiveness. Shelley has been personally affected by cancer after losing her husband to melanoma and some of her dearest friends to cancer. Shelley has committed her career to helping cancer patients identify the best care options. Through Cancer Help Desk, Shelley can lend her expertise to ensuring that the organization remains mission-focused and fiscally responsible.

Deb has 20+ years of experience in nursing and is multiply certified, including as an Advanced Practice Registered Nurse and Adult Gerontology Clinical Nurse Specialist with an oncology specialty. She was previously the Director of Patient Services for Cancer Commons and former System Lead for Oncology Navigation and Survivorship for a large healthcare system. She is regularly published by and a Contributing Editor for the Oncology Nursing Society’s publication, VOICE, and other nursing publications. Deb has committed the remainder of her working years to helping cancer patients navigate to the best possible care. Starting Cancer Help Desk is her “dream job” and every day is committed to helping patients and caregivers who can benefit from her experience as an oncology advanced practice nurse.

Rebecca has 20+ years of experience in the cancer diagnostics and oncology sectors and a personal mission of ensuring every cancer patient has real-time education and access to cancer testing, treatment, and clinical trials. She is the founder of Swelter, a digital healthcare company, past CEO of Cancer Commons, Co-Founder and past President of Taproot Health, and former Senior Director of Clinical Collaborations at Foundation Medicine, a genomic sequencing company, where she developed and headed up key initiatives, such as the Precision Medicine Exchange Consortium. Rebecca has a steadfast commitment to helping anyone dealing with a cancer diagnosis. Her passion is ignited from losing close family and friends to cancer. Cancer Help Desk is her way of sharing her expertise to help patients, providers, and companies to connect in more efficient ways to improve individual outcomes.

A visionary leader in emerging technologies, Raj specializes in driving innovation-fueled growth through drones, robotics, AI, IoT, AR/VR, and blockchain. Focusing on strategic partnerships, he creates synergies between technology players and various industry verticals, including healthcare.  Known for developing effective monetization strategies and fostering sales excellence through demand creation, he shares his extensive customer relationship experience in managing large, multinational project teams. Raj is an excellent communicator with strong analytical abilities and attention to detail.

Diane is an accomplished medical science liaison in the biotech industry. Her career has been marked by exceptional performance and a deep commitment to bridging the gap between scientific innovation and clinical application. Diane has consistently demonstrated her sales, marketing, and business management expertise. Her ability to build strong relationships with world-class clientele has been a cornerstone of her success. As a medical science liaison, she has leveraged these skills to effectively communicate complex scientific information to healthcare professionals, researchers, and key opinion leaders.

Susan served as the CFO of Harvard Investment Company, based in Redwood City, CA. Prior to this position, she was the co-founder of Pacific Express Airlines, based out of Chico, CA. In addition, her background includes numerous years in the cruise industry, working for Royal Viking Line, American Hawaii Cruises and Crystal Cruises. She currently serves on the Boards for NCEFT, based in Woodside, CA and Peninsula Volunteers, located in Menlo Park, chairing both of their annual fundraisers. Susan has been involved with nonprofits for numerous years.

Mike is the founder of Courage Groups, an organization supporting caregivers and providing therapy for grief. A prostate cancer survivor, Looney has battled the disease for nine years using immunotherapy. After his wife’s death from Triple Negative Breast Cancer in 2021, his personal experience with caregiving and grief fueled his passion for helping others. Looney trained as a psychotherapist, focusing on mind and image control for Stage IV cancer patients at Cal Poly State University. He later transitioned to Organizational Development, working at Apple and Adobe before retiring in 2006.

Dr. Bloom is the Head of Pathology at Nucleai. He brings more than 35 years of clinical experience in pathology, oncology, telemedicine, and bioinformatics. Dr. Bloom has held a myriad of leadership positions including President and Head of Oncology & Immunotherapy for Human Longevity Inc., Chief Medical Officer for In Vitro Diagnostics at GE Healthcare, and Chief Medical Officer of Clarient. Prior to his industry experience, Dr. Bloom spent 15 years at Rush Medical Center holding various appointed positions including Director of Laboratory Operations, Director of Immunohistochemistry and Chief Information Officer of the Rush Cancer Institute. Dr. Bloom has been the principle investigator of more than a dozen clinical trials and has served as an advisor to numerous Pharmaceutical and Bio-Technology Companies. He received M.D. from Rush Medical College and his B.A. from Grinnell College.

Dr. Ibrahim is a leader in clinical trial management and immunotherapy development. At PICI, he established capabilities for multi-center trials focused on novel, science-driven combinations. He played a key role in developing Yervoy (ipilimumab) and PD-1, PD-L1, and CD137 antibodies during his time at BMS and AZ. An active member SITC and the Cancer Research Institute, he conducted immunotherapy research at the NCI’s Cancer Vaccine Branch. Dr. Ibrahim is recognized for advancing cancer immunotherapy and supporting innovative treatment approaches.

“Dr. C” is a board-certified plastic surgeon specializing in breast reconstruction and microsurgery. Educated in London, he moved to Texas in 1997 and joined PRMA Plastic Surgery in 2006, becoming its President in 2017. He completed fellowships in burn research, hand surgery, and microsurgery. He is certified by the American Board of Plastic Surgery and has authored scientific articles, spoken at international meetings, and received multiple professional awards. He created the Breast Advocate® App and founded Toliman Health and C&H Scientific, demonstrating his commitment to patient empowerment and innovative healthcare solutions.

Dr. Dhani is Executive Medical Director, Head of Clinical Affairs at Stealth Healthcare/Biotech Startup He is also the Principal Investigator of the ExoLuminate clinical trial, aimed at early detection of high-risk pancreatic ductal adenocarcinoma. A surgeon-scientist, Dr. Dhani completed a general surgery residency and specialized in transplant and hepatopancreatobiliary surgery. His research has earned him significant recognition, including the Emerging Liver Scholar Award and the Young Investigator Award from the American Transplant Congress. Dr. Dhani’s career also includes valuable experience in the oncology division at Natera. He holds a Master’s in Clinical Research from UCSD.

Dr. Beg is a distinguished oncologist and clinical research expert currently serving as a Senior Advisor for Clinical Research at the National Cancer Institute. With an MD, MBA, and FASCO designation, he is at the forefront of implementing innovative approaches in oncology, championing decentralized clinical trials and the integration of advanced technologies like AI in cancer research. Based in Dallas, Texas, he is a vocal advocate for precision health and patient-centric care. Dr. Beg actively engages with professional organizations and maintains a strong presence in the oncology community, contributing to discussions that shape the future of cancer treatment and research.

Dr. Pillay is a multifaceted expert in neuroscience, psychiatry, and personal development. As the chief medical officer and co-founder of Reulay, an AI-driven digital therapeutics company, he focuses on enhancing well-being and healthy longevity. A Harvard-trained psychiatrist, he graduated top of his class in South Africa and completed prestigious fellowships in psychopharmacology and brain imaging. He formerly served as Assistant Professor at Harvard Medical School and directed key programs at McLean Hospital. Dr. Pillay is renowned for his unique approach that combines scientific rigor with spiritual insights, addressing the challenges faced by high-achievers. A world-renowned speaker and author, he continues to maintain an active clinical practice while driving innovation in digital therapeutics.

Dr. Previs is a board-certified gynecologic oncologist specializing in women’s health, precision medicine, and early-phase clinical trials. Her research focuses uterine cancers and biomarkers for prognosis and treatment response. She currently serves as  Director of Medical Affairs at Labcorp. She previousldy led a translational laboratory developing novel cancer therapies and studying tumor immune microenvironments. Dr. Previs obtained her medical degree from the University of Virginia, completed her residency at Duke University Medical Center, and fellowship at MD Anderson Cancer Center. She maintains an adjunct faculty appointment at Duke.

Dr. Patz is a distinguished medical researcher and entrepreneur, serving as Co-Founder, CEO, and Board Member of Grid Therapeutics. With a background in physics from Duke University and medical training from the University of Maryland, Dr. Patz has dedicated over two decades to lung cancer biology and early detection research at Duke University. His diverse experience includes a stint as a High Energy Physics researcher at Harvard University and faculty positions at prestigious institutions such as Brigham and Women’s Hospital, Harvard Medical School, and the Dana-Farber Cancer Institute. Dr. Patz’s multidisciplinary expertise in science and medicine uniquely positions him to lead Grid Therapeutics in its mission to develop innovative cancer treatments.

Hilary, a clinical nurse with diverse experience, founded cancer screening and prevention services in 2010, established a nationally recognized colon cancer screening program, and created the largest lung cancer screening program in the U.S., spanning 21 sites across Kentucky. Her innovative work led to an invitation to present before the U.S. Congressional Caucus for Lung Cancer Awareness. Hilary continues her work in lung cancer screening and program development at KentuckyOne Health. She received the Florence Nightingale Award from the University of Louisville in 2016. Through the Rise Up Against Cancer website, she provides resources and support to cancer patients and their loved ones.

Heather is currently the Oncology and Palliative Care Director at Franciscan Health in Lafayette, Indiana.  She obtained her Doctor of Nursing Practice from Purdue University in 2015 and has been an oncology nurse for 22 of her 25-year career.  Heather is an active member of the Oncology Nursing Society, contributing her knowledge through posters and podium presentations. In 2017, she received the prestigious Pearl Moore Making a Difference Emerging Leader Award and continues to seek ways to overcome barriers to optimal patient outcomes.

Jessica has vast oncology experience, beginning her career at Capitol Hill Hospital in Washington, DC. She’s held esteemed positions at the National Institute of Health, Tufts Medical Center, and Moffitt Cancer Center. Her expertise ranges from pediatric bone marrow transplant to oncology nurse case manager and patient educator for Blue Cross Blue Shield of MA.  Jessica is passionate about ensuring that people facing cancer have equal access to care and resources. She works tirelessly promoting solutions to an individual’s barriers to accessing care.

Susan has been an oncology nurse for 46 years. She worked at Duke Cancer Center Raleigh from 1990 to 2022 and is currently working as an Oncology Clinical Nurse Specialist at WakeMed in Raleigh, helping establish cancer services. Susan has been active in the Oncology Nursing Society, holding positions on the Oncology Nursing Certification Board of Directors for 6 years and on the Oncology Nursing Society Board of Directors for 3 years. Susan earned her Master of Science in Nursing at Duke University School of Nursing, graduating in 2007. She has presented and published on a variety of oncology topics. Susan has two adult sons and her beloved dog, Piper.

Sheila is a highly experienced oncology nurse having served her entire nursing career in cancer care. She is experienced in chemotherapy infusion, nurse navigation, and leadership. She moved from West Virginia in 2016 to help establish a strong nurse navigation program at Intermountain Health in St. George, Utah. Her colleagues appreciate her no nonsense approach to solving problems and supporting patients and their families. Sheila is active in community service and generously volunteers her time to various causes. She and her husband Randy enjoy the outdoors, their dog Bourbon, and cheering for the WV Mountaineers.

Cindi is a co-founder and long-standing contributor to the Oncology Nursing Society (ONS) having devoted her career to oncology nursing from day one. Cindi has been the recipient of numerous awards including the Biden FIERCE award, ONS Lifetime Achievement Award, Distinguished Service Award, and the CURE Magazine Extraordinary Healer award.  Cindi is a widely published author, editor, and speaker. Cindi retired from Sutter Health where she served as Director of Patient Support Services, oncology nurse navigator, and Breast Program Coordinator. She is the CEO of Cantril Recovery Services and leads resiliency retreats for oncology professionals. Cindi remains and will always be a fierce patient advocate!

Sandeep is a mission-driven Chief Technology Officer and Philanthropist with over 20 years of experience in creating groundbreaking software products for government agencies and major defense contractors. His expertise lies in optimizing resources and solving complex problems across various environments. His 17-year tenure at SIMS Software showcases his ability to foster a culture of trust, ownership, and innovation. Beyond his professional achievements, he is deeply committed to philanthropy, having sponsored the education of over 50 students and funded pediatric brain tumor clinical research trials.

Nikhil is a versatile Full Stack Software Engineer and Technical Architect with over a decade of experience across diverse domains including healthcare, media, banking, ERP, and telecom. Proficient in a wide array of technologies, he excels in both backend and frontend development, utilizing languages such as Java, Angular, and React. Nikhil’s expertise extends to various databases, cloud platforms, and CI/CD tools. With a strong background in technical design and testing. His end-to-end experience in design, development, delivery, and support, coupled with domain knowledge in multiple industries, makes him a valuable asset in complex software projects.

Trish has over 22 years’ experience developing biomedical imaging informatics solutions and technology to facilitate multi-modality and multispecialty image-based exchange, collaboration and management in distributed environments. She founded VisualShare and served as CEO until its acquisition by XIFIN in 2015. Previously, Goede was at the University of Utah where she pioneered a number of image, visualization and collaboration tools. She was the co-director of the Electronic Medical Education Resource Group (EMERG), and as its director, established the Utah Center of Excellence for Electronic Medical Education. Goede holds an MS in Computational Visualization and a PhD in Biomedical Imaging Informatics.

With 25 years of product and project management experience, Jodi brings a unique blend of technical, clinical, and business expertise to the software industry. Her core competencies span process improvement, product management, marketing, and PMO directives. Having launched industry-first technologies and led strategic planning initiatives, Jodi excels at building high-performing teams across diverse portfolios. Her strong technical orientation, exceptional communication skills, and product positioning abilities have consistently delivered successful outcomes for complex projects.

Mike, a British executive based in Silicon Valley since 2008, has built a distinguished career in global commercial leadership. As the founder of Tata Communications’ Global NextGen business unit, he grew it to a $320+ million revenue P&L, fostering partnerships with tech giants like Amazon, Google, and Microsoft. Mike’s expertise extends to innovation, having led global programs that incubated numerous startups and contributed to building major cloud and technology platforms. With over 20 years of experience in senior roles at international corporations, Mike is passionate about team building, problem-solving, and emerging technologies. He is a Fellow of The Chartered Institute of Marketing and advises startups and non-profits across various sectors.

Feroz is a seasoned technology leader with over 27 years of experience in AR/VR, Industrial IoT, and Digital Transformation. He currently serves as Global Strategic Alliances Leader at Lenovo. Previously, he was Head of ThinkReality xR Services at Lenovo, where he led GTM strategy and services delivery for enterprise AR/VR customers. Feroz has successfully deployed numerous AR/VR solutions across industries, driving value for Lenovo’s clients. His expertise spans enterprise networking, cloud services, and wearable technologies, gained from roles at RealWear, Cisco, and F5 Networks. Feroz holds a master’s in Engineering Management from Santa Clara University.

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