Patient and Family Support

As you and your loved ones begin this sarcoma journey, we want to let you know that you are not alone. One of the hurdles facing many sarcoma patients is a sense of isolation. However, while sarcomas are rare, many people here in the Midwest have been on the journey that you are beginning. We are here to support and assist you as you confront and conquer this disease.

Rein in Sarcoma Support Team

Do you have questions about your disease or treatment? Are you feeling scared or alone? We can connect you with a trained volunteer who’s been there.

Talk and Together Time

A monthly gathering of sarcoma survivors and their caregivers. Individuals share their stories, provide updates on their treatment, ask, and answer questions.

RIS Circle of Support Facebook Group

Connects those affected by sarcoma to offer support, ask questions, and share experiences.

Rein in Sarcoma Patient Guidebook

The RIS Sarcoma Patient Guidebook provides information and valuable resources for the newly-diagnosed sarcoma patient. You can order a paper copy of the notebook or download an electronic copy.

Sarcoma tote bags

The RIS Patient and Family Support Committee, made up of many members who are sarcoma survivors, decided that one way they could help newly diagnosed or relapsed patients was to have gift bags available for hospital nurses to give to these patients to show support in their battle against sarcoma.

Our gatherings are held year-round in the Twin Cities. They are a wonderful opportunity to meet and learn from others who are facing sarcoma. It is also a rare opportunity to get and give support. Our gatherings are free of cost for sarcoma patients, survivors, and their immediate families; as well as for persons who have lost a family member to sarcoma.

Check our calendar page to register for any of the events below

Winter Gathering

Winter | January

An afternoon of community fellowship, storytelling, and education. Open to all Sarcoma patients, survivors, family, friends, and those who have lost a loved one to sarcoma.

RIS Sarcoma Family Picnic

Summer | July

Our picnic is held annually for sarcoma patients, survivors, and loved ones in conjunction with the annual Rein in Sarcoma Party in the Park event. Hosted by sarcoma doctors and researchers from the University of Minnesota, Children’s Hospitals, and Mayo Clinic.

Kraig Kuusinen at Rein in Sarcoma Remembers

RIS Remembers

Fall | October

RIS Remembers focuses on people who have lost a loved one to sarcoma cancer in a relaxing, soothing atmosphere. Musical guests, motivational speakers, and grief specialists provide a pleasant and supportive get-together for people who are coping with a recent loss or a long loss.

Caregiver role 

A caregiver is someone who provides support and care throughout sarcoma cancer treatment. Caregivers are a crucial part of any cancer care team.  

A caregiver can be: 

  • A spouse or partner 
  • Adult children 
  • Brothers or sisters 
  • Parents 
  • Friends or co-workers 

Support for Caregivers 

Being a caregiver can feel overwhelming. It may help to learn what you’ll need to do. You are not alone. Hearing from other caregivers can be helpful to caregivers. Also, taking care of your own health and well-being is an important part of being a caregiver. Rein in Sarcoma provides one-one-one support from peer mentors for caregivers <insert link>. 

Caregiver resources 

General caregiving resources 

American Cancer Society 

Learn about what to expect as a caregiver for a cancer patient, as well as suggestions on taking good care of yourself. 

Caregiver Support Video Series (cancer.org) 

This video series provides educational support to caregivers as they assist with the everyday needs of cancer patients and provide self-care techniques to improve their quality of life. Includes videos on caregiver self-care, lifting patient, pain management, and much more.  

CancerCare.org 

Offers counseling, support groups, financial resources and more to people with cancer. 

Family Caregiver Alliance 

Provides information, support and advocacy for family caregivers.  

National Cancer Institute 

Free caregiving publications. 

Coping with emotions 

HelpGuide.org  

Offers tips to help avoid caregiver burnout. 

Mayo Clinic Stress Management Guide 

Empowers people to manage their health by providing a unique collection of articles with useful, up-to-date information about strategies for coping with stress. 

Communicating effectively 

About Health 

Tools to help improve communication. 

American Cancer Society 

Provides information to help you communicate with the patient and medical team. 

CancerCare 

Provides tip sheets on effective patient-doctor communications. 

Mount Sinai 

Tips for effective communication with your health care provider. 

Getting social support 

CancerCare 

Offers support groups and counseling for people affected by cancer. 

Cancer Support Community 

Offers a menu of personalized services and education for anyone affected by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, and community oncology practices as well as online. 

CaringBridge 

An online space where you can connect, share and receive support. It’s a personalized “caring” social network. 

Jack’s Caregiver Coalition 

Support for anyone 18 and older that identifies as male and has provided care for a loved one facing a health crisis. 

Gilda’s Club Twin Cities 

A nonprofit and the local affiliate of the Cancer Support Community, where everyone living with cancer can come for social, emotional, and psychological support. 

Lotsa Helping Hands 

Provides an easy-to-use, private group calendar specifically designed for organizing helpers. Everyone can pitch in with meal delivery, rides and other tasks to help life run smoothly during times of medical crisis. 

Relax and recharge 

 Mayo Clinic Guided Relaxation 

This 8-minute video features piano music, a candle flame to focus on, and a soft female voice guiding you through breathing techniques. 

YouTube.com 

Search “guided imagery” or “guided meditation” to find various short video clips to help you relax, recharge and get rest. 

Interested in getting involved with Patient and Family Support activities?

The RIS Patient and Family Support Committee manages our support activities for sarcoma patients, survivors and their loved ones. The Committee is ran by volunteers—many who are sarcoma patients and survivors—and always welcomes new volunteers.