REsources

AGENCY / SELF-DETERMINATION

In the realm of education, agency refers to being an active actor in your own life rather than being acted upon by others. Agency s closely aligned with self-determination. Self-determined people know what they want and how they might go about getting what they want.

It is also the sense of autonomy, freedom, creativity, mastery; the belief that you can impact the world around you (Feiler, 2020, p 104). There are many ways to develop agency in your life. Some involve taking control of your decision-making. Some involve developing a greater understanding of who you are and how to go about getting what you want. Some websites and organizations that can assist you are:

2BSD / To Be Self-Determined
http://www.beselfdetermined.com/
This website was created by several of the most well-known experts in teaching self-determination skills. It describes a very powerful model for developing self-determination along with a number of resources.

Imerman Angels
https://imermanangels.org/
I met Jon Imerman when he was just establishing Imerman Angels. As I cancer survivor, I was one of his first mentors/angels. Over the years, I have been a mentor for several people who are dealing with the same cancer I experienced. Helping someone who is going through something like what you experienced can be very empowering.

BELONGING / COMMUNITY / CONNECTION

Finding others who have shared your experience can help you to develop a sense of belonging. The websites in this group are links to organizations that provide opportunities to meet and share with others who are survivors of childhood or young adult cancers.

Critical Mass: The Young Adult Cancer Alliance
https://www.criticalmass.org/
This website provides a place for adolescent and young adult survivors of childhood cancers to get focused information about health concerns and mental health support.

Stupid Cancer
https://stupidcancer.org/
Stupid Cancer offers a lifeline to the adolescent and young adult cancer community by connecting them to age-appropriate resources and peers who get it. Its mission is to empower adolescents and young adults affected by cancer by ending isolation and building community.

Young Adult Survivors United
https://www.yasurvivors.org/
YASU is the largest community in Western PA for young adult cancer survivors and their co-survivors, providing them the ability to cope and thrive from emotional, social, and financial support under professional guidance and with peers who understand and can relate.

Gilda’s Club/ Our Clubhouse
https://www.ourclubhouse.org/
Gilda’s Club New York City was founded in memory of the talented Saturday Night Live comedian, Gilda Radner, who said that having cancer gave her membership in an elite club she would rather not belong to.

In 2000, the success of Gilda’s Club NYC gave birth to Gilda’s Club Worldwide, an organization dedicated to developing a national network of clubhouses. In 2009, Gilda’s Club Worldwide merged with The Wellness Community to form the Cancer Support Community, which is now the largest cancer support network in the country. Although an affiliate of CSC, Gilda’s Club NYC is an administratively and financially independent entity.

In Pittsburgh, Gilda’s Club is now Our Clubhouse. Located in the strip district, it offers many services and opportunities to connect with other cancer survivors.

SURVIVING AT COLLEGE

Adjusting to life in college is challenging for everyone. The following websites offer some help. Some in the form of direct assistance and others with ideas about how to acclimate to the new and different demands of college and university life.

University of Washington Disabilities, Opportunities, Internetworking, and Technology (DO-IT)
https://www.washington.edu/doit/
The DO-IT (Disabilities, Opportunities, Internetworking, and Technology) Center is dedicated to empowering people with disabilities through technology and education. It promotes awareness and accessibility—in both the classroom and the workplace—to maximize the potential of individuals with disabilities and make our communities more vibrant, diverse, and inclusive.

CAST
https://www.cast.org/
CAST is an organization that lives their tagline: “Until Learning has no limits”. Originally entitled the Center for Assistive and Special Technology, they created an instructional design called Universal Design for Learning (UDL) that creates instructional spaces in K-12 education and college that are designed from the beginning to allow for success for the widest range of learners. I have been a proponent of and advocate for UDL for several decades and encourage you to explore it.

SUPPORT FOR INDIVIDUALS WHO ARE EXPERIENCING CANCER AND THEIR FAMILIES

Mattie Miracle Cancer Foundation
https://www.mattiemiracle.com/
This website is dedicated to supporting children and families who are in active treatment. The foundation recognizes that the impact of cancer goes beyond the medical challenges. It has supported the creation of the first psychosocial standards of care. Links to professional articles supporting the psychosocial standard can be found on this website.

Lending Hearts
https://www.lendinghearts.org/
Lending Hearts is based in Pittsburgh and provides social and emotional services to children and young adults living with cancer. All services are free and do not require insurance. Lending Hearts addresses the need for assisting pediatric cancer patients & families in surviving treatment. Programs & services promote wellness, community and emotional support both in treatment and beyond. Our newest initiative for surviving treatment is a complete pediatric oncology wellness program we are call Integrative Wellness. It includes holistic activities supporting mind, body and well-being.

ChaiLIfeline
https://www.chailifeline.org/
ChailLifeline is a faith-based support organization with a wide range of services. The mission of ChaiLifeline is to bring joy and hope to children, families and communities impacted by serious illness or loss.

Chai 4 Ever
https://www.chai4ever.org/
The goal at Chai4Ever is to lighten the impact of parental illness for the patient, the spouse, and the children by providing practical and emotional support for the whole family. They strive to create a caring community that surrounds the family in crisis with strength and hope and which helps keep their home life stable and functional, so the children can thrive and the parent can heal.

Some of our many support services include homemade meal delivery, transportation to and from medical appointments, homework help for children, housekeeping assistance, medical insurance advocacy, crisis counseling, caregiver support for the healthy spouse, and so much more. Our family retreats give patients and their families a chance for a stress-free weekend away to recharge and reconnect, and we collaborate with the children’s schools to ensure the children receive the extra support they need to maintain their grades.

Cancer Support Community
https://www.cancersupportcommunity.org/
The mission of Cancer Support Community is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. They are an ally for anyone who is striving to manage the realities of this disruptive disease and get back to normal.

Cancer Care
https://www.cancercare.org/
Cancer Care provides a range of support services to survivors of cancer, including counseling, case management, support groups, workshops, publications, financial assistance.

INFORMATION/FACTS/STATISTICS

Children’s Oncology Group
Cure Search (Children’s Oncology Group), www.curesearch.org
The mission of Cure Seach is End childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame. The website provides up-to-date information about cancer research, resources and education.

Candlelighters Childhood Cancer Foundation
https://candle.org/
Candlelighters Childhood Cancer Foundation of Nevada (Candlelighters) was chartered in 1978 by two families, each of whom had a child being treated for cancer. With little to no resources to help them navigate the world of childhood cancer, they came together to create a network of support for families affected by the disease. They believed that families could find strength, knowledge, and comfort by banding together during their most difficult times. They wanted to use their experience to lessen the burden of those they knew would follow. Since that time, thousands of children in Nevada have been diagnosed with cancer. (from the website.)
National Cancer Institute: Division of Cancer Control and Population

Sciences/Office of Cancer Survivorship of Links
https://cancercontrol.cancer.gov/ocs
The NCI Office of Cancer Survivorship (OCS) works to enhance the quality and length of survival for all persons diagnosed with cancer and to prevent, minimize, or manage adverse effects of cancer and its treatment. Lots of statistics about a range of cancers., There are a number of inks to other organizations as well.

Children’s Brain Tumor Foundation
https://cbtf.org/
The Mission of the Children’s Brain Tumor Foundation is to Improve the treatment, quality of life and the long-term outlook for children and families affected by a brain or spinal cord tumor. CBTF has support and community groups for adolescents and young adults who are survivors.

Childhood Trauma Recovery
https://childhoodtraumarecovery.com/
Childhood Cancer is a very challenging experience for both patients and their families. Research shows that many survivors experience post-traumatic stress. This website provides guidance and support for those who experience PTS.

The National Children’s Cancer Society
https://www.thenccs.org/
Though you may be an adolescent or young adult cancer survivor, many of the resources you may find useful can be found in organizations that support childhood cancers. Each one understands that survivors of childhood cancer group up and need resources that can guide them in young adult endeavors such as college and/or post-secondary training.

DISABILITY RIGHTS AND SUPPORT

Disability Rights Pennsylvania
https://www.disabilityrightspa.org/
If you have need to understand your rights and responsibilities as a person with a disability, then Disability Rights of Pennsylvania may be helpful. DRP works to advance and protect the civil rights of adults and children with a wide range of disabilities to ensure their rights to live in their communities with the services they need, to receive a full and inclusive education, to live free of discrimination and abuse and neglect, and to have control and self-determination over their services. They provide several self-advocacy guides, including ones on voting, education, and transition to adulthood.

DREDF—Disability Rights Education and Defense Fund
https://dredf.org/
The Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. Its mission to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development. Its vision is a just world where all people, with and without disabilities, live full and independent lives free of discrimination.