Adolescent/Young Adult Issues

> 2004 Participants
> 2003 Participants
> 2002 Participants

2004 Participants

CancerCore, A Young Adult Patient Navigator Program
Ulman Cancer Fund for Young Adults, Inc. - Ellicott City, MD
www.ulmanfund.org
This grant supports the development of CancerCore, A Young Adult Patient Navigator Program, a pilot initiative in designing and implementing a volunteer driven patient navigator module specifically for young adult cancer patients and their families. CancerCore adopts a patient navigator strategy that provides patients with an educated and helpful guide. The patient navigator offers a non-medical perspective and acts as a friendly voice, resource guide, and navigation tool for recently diagnosed cancer survivors and/or loved ones. This project involves infrastructure design, development and production of program materials, recruitment of oncology center staff (particularly social workers) in the program, and finally, measurement of the number of patients and navigators involved in the program.

Young Adults with Cancer Retreat
The Minnie Pearl Cancer Foundation - Nashville, TN
www.minniepearl.org
The Young Adults with Cancer Retreat serves young adult cancer survivors, currently in treatment and those finished with treatment, ages 18-35, from Tennessee and contiguous states, and also seeks out survivors from more isolated, rural areas of the Southeast. It is the only such retreat in its community and includes sessions on fertility, access to healthcare, dating and intimacy, insurance issues, and advocacy, as well as time for participants to share their own personal stories and information.

Navigating the New Normal
Thomas Jefferson University - Philadelphia, PA
www.kcc.tju.edu
Navigating the New Normal is a program that provides comprehensive psychosocial support and education for individuals between the ages of 18 and 40 who are living with cancer. This program builds on areas of proven experience and success within the Kimmel Cancer Center at Thomas Jefferson University while offering a new and unique subset of services to young adult survivors. The overall goal of this program is to address the physical, emotional and social needs of young adult cancer survivors in the Philadelphia region. The program: 1) increases young adult survivors' knowledge about issues important to their long term physical, emotional and financial well-being through lectures, web-based information and consultation with a social worker, 2) decreases feelings of loneliness and isolation felt by young adult cancer survivors, specifically those facing less common cancers, through peer support in the form of a Buddy Program and networking opportunities at group lecture series meetings, and 3) increases knowledge among young adults recently diagnosed with cancer of the resources available to them through web-based information and consultation with a social worker.

The Fertility Counseling and Gamete Cryopreservation Program (FCGCP)
University of Michigan - Ann Arbor, MI
www.cancer.med.umich.edu
The Fertility Counseling and Gamete Cryopreservation Program (FCGCP) is a joint effort of the University of Michigan Cancer Center, and the University of Michigan (U-M) Department of Obstetrics and Gynecology. The goal of the Program is to bring the option of the latest reproductive technology directly to the cancer patient as part of their treatment. Started in November 2002, the FCGCP offers counseling and education services, as well as semen collection and storage services, to male patients, newly diagnosed with cancer. One of the most difficult and sensitive aspects of the FCGCP is counseling teen-age boys who are forced to deal with issues involving sexuality and reproduction before they have the emotional maturity to handle them. This grant supports the development and presentation of an educational video with the ultimate goal of increasing the number of adolescent males who are able to successfully cryopreserve sperm prior to the onset of cancer therapy.

Cure and Beyond
Tomorrow's Children's Fund - Hackensack, NJ
www.atcfkid.com
Currently, this organization's Cure and Beyond program is the only program within the community that provides services to childhood cancer survivors. This grant allows the program to add a Career Counselor to the staff to provide vocational counseling to its constituents. It is expected that the Career Counselor will meet with approximately 30 to 50 survivors on multiple occasions during the first year of this program. For each quarter, a substantial number of participants will "graduate" from using the Career Counselor's services due to achieving fulfilling employment, clearer understanding of personal career goals and direction, or to pursue further training or education that will provide them with more marketable skills. It is expected that at least two small group sessions, one for high school age students, and one for young adults, will be held every three months to address career goals.

Listen Up!
Creative Healing Project - San Francisco, CA
www.creativehealingproject.org
The Creative Healing Project uses art to transform and connect children, youth and adults experiencing isolation and loss due to illness, trauma and other life changing events. Art is used as an empowering process to develop each person's potential for healing, wholeness and communication. The new Listen Up! program offers young cancer survivors in the Bay Area the opportunity to express themselves creatively, connect with their peers, access emotional support, and strengthen their healing process through: 1) facilitated expressive arts groups; and 2) a unique publication highlighting the experiences of young people in all stages of cancer survivorship. Because young people surviving cancer experience extreme isolation during an already emotionally challenging stage of life, it is extremely important that they have access to support and a chance to share their experiences with their peers. Listen Up! improves the quality of life for adolescents and young adults surviving cancer by reducing their sense of isolation and supporting healing through the expressive arts.

I've Gotta be Me!
The Art Station - Ft. Worth, TX
The Art Station is a nonprofit organization that provides individual and group art therapy and community education programs that promote art as a therapeutic tool that fosters physical and mental health. I've Gotta be Me! is a complimentary new program in this community providing group support for adolescents living with cancer. The program is age specific and has no restrictions other than the physical ability to attend and participate. I've Gotta be Me! is a 12-week group art therapy program that begins with an individual in-take session, followed by ten weeks of group sessions of eight to ten participants and concludes with a Family Night and art exhibit. The program is developed for two age specific groups; adolescents that are ages 13 to 15 years, and another group for ages 16 to 18 years.

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2003 Participants

Ambassadors Club
Gilda's Club Quad Cities - Davenport, Iowa
www.gildasclubqc.org
Thanks in part to a 2003 community grant from the LAF, Gilda's Club Quad Cities in Davenport, Iowa will establish the Ambassadors Club to help adolescents/teenagers who either have been diagnosed with cancer or have a family member with cancer. Gilda's Club, a free cancer support community for men, women and children affected by a cancer diagnosis, is the only organization of its kind in the Quad Cities area of Iowa/Illinois. The Ambassadors Club will carefully select and train local high school students to serve as outreach workers within their schools to listen to, comfort and assist peers who are living with cancer.

Bearing Witness to Cancer
The Ulman Cancer Fund for Young Adults - Ellicott City, Maryland
www.ulmanfund.org
The Ulman Cancer Fund for Young Adults, founded in 1997 to fill the void in health care services for young adults affected by cancer, sponsored a unique college course in the spring of 2003. "Bearing Witness to Cancer" was offered at Brown University to educate undergraduate premedical students about the cancer experience, including areas of biology, epidemiology and social science as well as personal memoirs. The goal of the course is to enhance the sensitivity of future practitioners to the broad bio-psychosocial needs of cancer patients. A 2003 community grant from the LAF will enable the continuation of this successful pilot curriculum.

Camp Aldersgate Design/Build Program
School of Architecture, University of Arkansas - Fayetteville, AR
www.uark.edu
A unique program at the University of Arkansas School of Architecture will create an accessible treehouse for Little Rock's Camp Aldersgate, which offers camps for children and adolescents with special needs and conditions such as cancer. Through the Camp Aldersgate Design/Build Program, architecture students will build a wheelchair-accessible treehouse, complete with a drawbridge and birdwatching area. A 2003 community grant from the LAF will help fund costs associated with the treehouse project, which will allow campers to be physically active and to experience nature from a new perspective, while teaching architecture students the importance of accessible design while allowing.

Fantastic Friends Weekend
Special Love, Inc. - Winchester, Virginia
www.speciallove.org
A 2003 community grant from the LAF will enable 70 teenagers to attend Fantastic Friends Weekend, a retreat for teens ages 13 to 17 who have cancer or have been treated for cancer within the past three years. The program was created by Special Love, Inc., a non-profit organization founded in 1983 in Winchester, Virginia. Special Love's Fantastic Friends Weekend offers teens with cancer the opportunity to meet other young adults with cancer and share their experience in a supportive setting as they enjoy a wide variety of recreation and entertainment. In recognition of the important role that a teen's friends play in their recovery, each teen is permitted to invite one of his or her best friends (also age 13 to 17) to attend the retreat.

Grow With Strength
American Cancer Society Hawaii Pacific, Inc. - Honolulu, Hawaii
www.hi-cancer.org
Of the American Cancer Society Hawaii Pacific's many quality of life activities, several focus specifically on the special needs of children and young adults with cancer. These Childhood Cancer Programs are offered free of charge to all children and young adults (ages 7 to 27) in Hawaii who have been diagnosed with cancer. A 2003 community grant will partially fund Ho`oulu Me Ka Ikaika ("Grow with Strength"), a teen retreat for adolescents with cancer. This four-day annual retreat empowers young people to face the combined stresses of cancer and the teen years. Camp Ikaika's goals are to help participants candidly discuss long-term survivorship issues, build self-esteem, conquer fear associated with a cancer diagnosis, address the cancer experience as a life experience and enjoy fun and fellowship with other cancer survivors.

No Way! It Can't Be: A Guidebook for Young Adults Facing Cancer
The Ulman Cancer Fund for Young Adults - Ellicott City, Maryland
www.ulmanfund.org
"No Way! It Can't Be: A Guidebook for Young Adults Facing Cancer" was originally produced by The Ulman Cancer Fund for Young Adults in 1998. The guidebook, which has since evolved from the original pamphlet to its current length of 58 pages, contains a wealth of information ranging from deciphering a cancer diagnosis to dealing with health care practitioners to managing the emotional and physical challenges associated with cancer. Serving as a self-help tool, it introduces readers to various support groups and programs available to them. A 2003 community grant from the LAF will fund the printing of 20,000 guidebooks, which will be distributed to cancer centers and support organizations throughout the United States.

Outdoor Challenge Course
Camp Sunshine - Decatur, Georgia
www.campsunshine.com
The Outdoor Challenge Course offers support for eight adolescent cancer survivors (15-18 years of age). One Camp Sunshine staff member (a pediatric oncology nurse) and one volunteer accompany the eight teens. The course is contracted with the Colorado Outward Bound School. The group flies from Atlanta to Denver and then travels to base camp in Leadville, Colorado. The six-day course includes backpacking, hiking, a ropes course, group initiative challenges, remote camping, a peak climb and a solo overnight experience. The participants are encouraged to reach beyond their comfort zones and learn more about themselves and each other. An award from the LAF made this program possible in summer 2003.

Post-Treatment Resource Program
Memorial Sloan-Kettering Cancer Center - New York, New York
www.mskcc.org
For the young adult dealing with cancer, the journey is often complicated by the fact that most educational and support programs are geared to deal with older patients. The Post-Treatment Resource Program at Memorial Sloan-Kettering Cancer Center in New York, New York, is a unique effort that acknowledges the specific needs of young adults and provides free services to meet these needs. The program is open to the immediate community as well as to survivors and families around the country. A community grant from the LAF will help the Center expand the program with the first annual young adult cancer survivors' conference. The one-day conference will address multiple areas of interest including medical issues, legal rights, insurance, psychosocial adjustment and growth, dating and fertility as well as general survivorship issues and survivorship activism.

Riley Children's Cancer Center Teen Retreat
James Whitcomb Riley Hospital for Children - Indianapolis, Indiana
www.rileyhospital.org
Riley Children's Cancer Center in Indianapolis, Indiana provides critical support for teen cancer survivors, who face many unique bio-psychosocial issues as a result of cancer. A 2003 community grant from the LAF will fund a Teen Retreat to help adolescent oncology patients deal with these issues. The Teen Retreat is designed to help cancer survivors ranging in age from 13 to 17 build peer support, share their experiences, instill a sense of community, improve feelings regarding body image and relax and have fun while encouraging their own healing process.

Stretch It: A Retreat for Young Adult Cancer Survivors
Children's Hospital of Los Angeles - Los Angeles, California
www.ChildrensHospitalLA.org
A grant from the LAF helped Childrens Hospital Los Angeles launch Stretch It, a three-day retreat designed to encourage healthful lifestyle choices and address survivorship issues for young adult cancer survivors who are 21 years and older and live in Southern California. Approximately 50 participants will "stretch" beyond the challenges of cancer and its treatment through exercise, group therapy and health education. The LAF community grant will fund the retreat's fitness activities and will also help Childrens Hospital of Los Angeles to evaluate the model project so that it can be replicated and improve the lives of young adult cancer survivors throughout the United States and beyond.

SuperSibs! Journals
SuperSibs! - Hoffman Estates, Illinois
www.supersibs.org
Thanks to a 2003 LAF community grant, SuperSibs! expanded their Support and Advocacy Program to include SuperSibs! Journals. SuperSibs!, a new and innovate nonprofit organization, was created to address the emotional turmoil and feelings of displacement and unimportance often felt by the brothers and sisters of children diagnosed with cancer. The goal of the SuperSibs! journals is to allow siblings of children diagnosed with cancer an outlet to express their feelings in a comfortable and effective manner. SuperSibs! plans to launch their services nationwide to reach siblings of more than 12,000 children who are diagnosed with cancer.

Transitions to Independence Project
Dana-Farber Cancer Institute - Boston, Massachusetts
www.dana-farber.org
Dana-Farber Cancer Institute's Transitions to Independence Project helps adolescents and young adult cancer survivors cope with issues related to complex neuro-oncology diagnoses. A 2003 community grant from the LAF will help fund regional workshops for patients and families to provide community resource information and strategies to address patients' unique needs and to help build an informal social support network between patients and families. A separate workshop will be held to educate agencies providing rehabilitation, educational, housing or vocational support to young adults on the unique needs of cancer survivors. The grant will also support collaboration with community agencies, multidisciplinary teams and hospital-based clinics as well as ongoing clinical assessment and support of program participants.

Young Adult Survivors Conference
Children's Oncology Camp Foundation - Missoula, Montana
www.campdream.org
The first annual Young Adult Survivors Conference provided young adult cancer survivors with the skills to be advocates for themselves, for others and in their communities and in society at large. Young adult survivors participated in the conference on one of three levels: Personal Advocate, Mentor Advocate or Community Advocate. Through the conference, which will be held again in the future, participants gain the knowledge and tools they need to move to the next level of advocacy, the fourth and final level being State/National advocate.

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2002 Participants

Planet Cancer
www.planetcancer.org
The LAF awarded a grant to Planet Cancer to fund the development of a young adult peer support network. Planet Cancer is an Austin nonprofit whose mission is to bring together young adults with cancer to support each other. The award will fund two weekend retreats for Central Texas for young adults who have or have had cancer. Between retreats, Planet Cancer will continue building a community, both online and offline, for young adults with cancer. The LAF is excited to help Planet Cancer address the immense lack of support available for young adults living with, through and beyond cancer.

The Periwinkle Foundation: Camp Periwinkle
www.periwinklefoundation.org
Based in Houston, Texas, The Periwinkle Foundation is dedicated to developing and providing programs that enrich the lives of child cancer patients at Texas Children's Hospital and their families. One of their many programs is Camp Periwinkle, which offers children opportunities to discover what they can do instead of what they cannot do. With a community grant, the LAF will fund camp in August of 2003 for 10 young cancer survivors and 10 of their siblings.

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