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.
Below you will find some of our programs and initiatives, but you can contact us directly at firstname.lastname@example.org or call us at 1-844-727-2662 for personalized support or guidance.
Sarcoma Patient Starter Notebook
The Rein in Sarcoma Patient Starter Notebook provides support, hope, information, and valuable resources for the newly diagnosed sarcoma patient. The seventh edition of the Notebook is our biggest revision to date, with the most up-to-date information edited by our Medical Advisory Board: Christian Ogilvie, M.D.; L. Chinsoo Cho, M.D., M.S.; Emily Greengard, M.D.; Jutta Ellerman, M.D. of the University of Minnesota; Katharine Lange, M.D. and Julie Chu, M.D. of Children’s Hospitals and Clinics of Minnesota; and Scott Okuno, M.D. and Steven Robinson M.B.B.S. of the Mayo Clinic and Randy Hurley, M.D. of Regions Hospital/HealthPartners.
Rein in Sarcoma Support Network
The Rein in Sarcoma Support Network is an email list designed to provide resources and support for sarcoma patients, survivors and loved ones in the upper Midwest.
Upon signing up you will receive updates about RIS support events and gatherings of patients and survivors, which are held several times a year in several Metro Twin Cities locations.
In addition, upon joining the network you may request a copy (printed or digital) of our RIS Patient Starter Notebook.
Connect with a sarcoma patient, survivor or caregiver
We offer a peer-to-peer support program for sarcoma patients, survivors and their loved ones. At your request, we will connect you locally or nationally with sarcoma survivors or caregivers who have faced journeys similar to yours. Peer-to-peer meetings can happen via email, phone calls, letters and in-person.
Patient and Family Support Committee
The RIS Patient and Family Support Committee helps support sarcoma patients and their loved ones in their sarcoma journeys. Some of the support initiatives we offer include: peer-to-peer support, patient and family gatherings, patient educational programs, gift bags for newly diagnosed sarcoma patients, and more. The Committee also works to support those who have lost a loved one to sarcoma.
The Committee meets on a monthly basis. You are welcome to join us at future meetings.
Committee chair: Kraig Kuusinen
Tote bags of hope
Our Patient and Family Support Committee assembles these bags for current sarcoma patients. Packed with goodies such as lotion, lip balms and coloring books, our tote bags are made with care to make sarcoma patients' journey a little less painful. We distribute tote bags at University of Minnesota's hospitals, Mayo Clinic or Children's Hospitals and Clinics of Minnesota.
Patient and Family Support Events
RIS sarcoma family picnic (summer)
Our annual RIS sarcoma family picnic is an opportunity for sarcoma patients, their loved ones, and those who have lost someone to sarcoma, to socialize and celebrate our blessings. Hosted by sarcoma doctors and researchers from Children’s Hospitals, Mayo Clinic and the University of Minnesota, the picnic is provided free of charge as a program of RIS. Attend our annual picnic held for sarcoma patients, survivors and loved ones in conjunction with the annual Rein in Sarcoma Party in the Park event.
RIS Remembers (fall)
Organized by the Patient and Family Support Committee, 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 will provide a supportive get-together for people who are coping with a recent loss or a long loss. Our evenings usually begin with wonderful conversation and appetizers, along with cake and other refreshments, all while listening to great musical guests.
RIS Winter Gathering for sarcoma patients, survivors and their loved ones (winter)
Our annual Winter Gathering is a wonderful opportunity to meet and learn from others who are facing sarcomas. It is also a rare opportunity for those attending to both gain and provide support to others. RIS Gatherings are free to sarcoma patients, survivors and their immediate families as well as for persons who have lost a family member to sarcoma.
New patient checklist
The RIS New Patient Checklist provides suggestions for newly diagnosed sarcoma patients
A place to learn, share, hope, and honor. We hope these stories give you hope as well as a way to honor the memory of those who have touched our lives.