Adolescent and Young Adult Patient Navigation
The Adolescent and Young Adult Patient Navigation Program (AYA) at the Johns Hopkins Kimmel Cancer Center is sponsored in partnership with the Ulman Foundation.
Patient Navigator Role
The navigation services, provided by Devon Ciampa, MSW, LMSW, will address the psychosocial needs of adolescents and young adults with cancer through counseling, advocacy and provision of supportive resources.
Adolescent and Young Adult Patient Navigator Mission
To improve adolescents and young adults’ ability to manage their cancer experiences and long-term cancer survival by way of:
- Identifying the unique needs and of the young adults patients and their families
- Accessing support resources tailored specifically to adolescents and young adults
- Empowering young adult patients and their families to take an active role in their cancer experience and support them as they face the challenges
- Educating the patients and their families’ of their disease, treatment options and lifelong implications of treatment choices
- Encouraging effective communication with their clinical care team, family, friends, community and others in their support network
About Ulman Foundation
The Ulman Foundation, was created by Doug Ulman and his family in 1997 after Doug was diagnosed with cancer during college and had difficulty finding resources for people his age. Frustrated by this void, the Ulman Family established the foundation to create a community of support for young adults (ages 15- 39) and families facing cancer. A leading voice in the young adult cancer movement, Ulman has been working since 1997 at both the community level and with our national partners to raise awareness of the young adult cancer issue, and to ensure that all young adults and families impacted by cancer have a voice and the resources necessary to thrive. The mission of Ulman is to change lives by creating a community of support for young adults, and their loved ones, impacted by cancer. We continue to be driven by the goal of ensuring that no young adult has to face cancer alone and remain steadfast in our mission to work for and with young adults and their families as they battle cancer by offering support, resources, and a community that recognizes the profound effect of cancer on young people’s lives.
Adolescent and Young Adult (AYA) Supportive Resources
Here are some resources that may be helpful as you navigate your cancer journey:
3 Little Birds 4 Life
Enhancing the lives of young adult cancer patients, one wish at a time.
Works to create awareness that improvements in teen and young adult cancer survival rates have remained near 0% since 1975 and to promote health awareness, self-advocacy and action to provide this age group with the life-saving advantage of early detection.
Provides online support groups, publications, and videos directed exclusively to young adult survivors of cancer.
Cancer and Careers
Empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through a comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people.
Cancer Legal Resource Center
A national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles, provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.
Critical Mass (The Young Adult Cancer Alliance), "Mission Control"
Comprehensive database to help AYAs with cancer find the most up-to-date information on resources that best suit their needs, specific to diagnosis and geographic location.
Provides financial support for fertility preservation to women with cancer in their fertile years to ensure they can actualize the dream of motherhood.
A national LIVESTRONG initiative dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. The Financial Assistance page has a wealth of information on grants, financing, help with medication expenses and more.
FinAid! The Smart Guide to Financial Aid
A website with information about college scholarships for cancer patients, survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment.
Offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. Programs are all over the country and range anywhere from 1 day to 1 week. Any YA with cancer is eligible regardless of physical challenges, diagnosis or prognosis.
Focus Under Forty
Provides educational programs to shed light on the unique biology and care issues that are associated with patients with young adult cancer survivors. The goals for the educational courses in this series are to increase awareness and enhance the understanding of care issues and challenges associated with this patient population. Educational partners developing this Series include: ASCO, the ASCO Conquer Cancer Foundation, LIVESTRONG, the Commission on Cancer/American College of Surgeons, the Association of Physician Assistants in Oncology, and the American Society of Pediatric Hematology Oncology.
An online support community exclusively for teens affected by cancer.
Provides personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers. Through a unique matching process, Imerman Angels partners anyone seeking cancer support with a “Mentor Angel”. A Mentor Angel is a cancer survivor or survivor’s caregiver who is the same age, same gender, and most importantly who has beaten the same type of cancer.
Look Good, Feel Better
Online support and education for teens with cancer to help them cope and deal with their physical, social and lifestyle challenges associated with a cancer diagnosis.
National Cancer Institute (Adolescents & Young Adult-specific)
Provides information on the most common cancers in young people, how cancer is diagnosed and treated. Provides resources for where to get treatment and what questions to ask about clinical trials as well as tips to cope and lists of organizations that serve young people with cancer.
National Comprehensive Cancer Network – Guidelines for AYA Patients
Provides an online booklet to help adolescent and young adult cancer patients get the support they need, including the best possible cancer treatment. Includes basic information on cancer tests and treatments, tips for coping with the physical, social, and emotional challenges of cancer treatment, and information on resources that can help make the process easier.
The Oncofertility Consortium at Northwestern University
Provides resources to address the complex health care and quality-of-life issues that concern young cancer patients whose fertility may be threatened by their disease or its treatment.
Patient Advocate Foundation
Provides patient services by telephone, email, or web chat to those in need that fall under the scope of PAF services. Professional staff members intervene by making conference calls when needed, assisting with appeals to insurance companies or the Social Security Administration, negotiating with providers in medical debt situations or securing access to care.
A community of peer support and advocacy for AYAs with cancer, designed to connect and empower AYAs and help them access support and resources.
Seventy K: Survival Up
Dedicated to improving cancer care by educating patients, their families and healthcare providers about age appropriate treatment and the unique needs of AYA cancer patients.
Stupidcancer.org (The I’m Too Young For This! Cancer Foundation Foundation)
The nation’s largest online community for AYAs affected by cancer.
Surviving and Moving Forward for Young Adult Survivors of Cancer (The SAM Fund)
The SAMFund supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Through direct financial assistance, in-person and online support, The SAMFund helps young adults move forward towards their personal, professional, and educational goals.
Teens Living with Cancer
A community dedicated to helping teens live their best life through all stages of their disease and treatment.
Ulman Cancer Fund for Young Adults
A leading voice in the young adult cancer movement, UCF has been working since 1997 at both the community level and with our national partners to raise awareness of the young adult cancer issue, and to ensure that all young adults and families impacted by cancer have a voice and the resources necessary to thrive. In addition, the organization offers a patient navigation program at The Johns Hopkins Hospital, Sidney Kimmel Cancer designed to support adolescents and young adults in the management of their cancer experience. Grassroots organization dedicated to supporting, educating, connecting, and empowering AYA cancer patients and survivors.
Young Survival Coalition
Dedicated to the critical issues unique to young women who are diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.