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Virtual Support in a Virtual Age

Circle of support

Looking for additional support through your sarcoma journey? Join the Rein in Sarcoma – Circle of Support private Facebook page. It’s designed to connect sarcoma patients, survivors, and caregivers within the Upper Midwest region and provide support, share knowledge and experience, and raise awareness and advocacy.

While anyone can find the group and see page members, only members can post and see other’s posts and comments. Posts will not show up on your personal Facebook page.

As part of the community, members are encouraged to share their sarcoma experience, ask questions, share resources, and find support from those who have been through similar experiences. We ask that the group remains private — please don’t share posts outside of the community.

You can find the Facebook group via this link. To be admitted to the group, you will request access and answer a couple of questions. The questions ensure that you, or a loved one, has been or is considering treatment for sarcoma in the Upper Midwest.

Thank You Kraig Kuusinen

Kraig Kuusinen Party in the Park 2015

We want to express our heartfelt gratitude to Kraig for his leadership over the past several years as the Chair of the Patient and Family Support Committee. Kraig will be stepping down from this role, but will continue to be an active member of the Rein in Sarcoma community. 

Under Kraig’s leadership the committee successfully monitored the peer mentor program -matching  mentors to newly diagnosed patients, planned supportive events for those affected by sarcomas, and collected donations and assembled care packages which are distributed to newly diagnosed sarcoma patients. The committee will continue these important activities and build on new opportunities. 

Kraig will continue to be responsible for the luminary station at our signature event, Party in the Park. Luminaries are decorated by attendees in honor of survivors and patients, or in memory of a loved one lost to sarcoma. During the closing ceremony, we light the luminaries, and the name of each person being honored is read for all to hear.

Diagnosed in 1986, Kraig is now 35 YEARS cancer free from sarcoma! Thank you Kraig for your support and for inspiring others.If you are interested in joining the Patient and Family committee, please visit Volunteer – Rein In Sarcoma

The Value of Community

Talk and Together Time

Sarcoma Patients/Survivors gather for time together

by Vicki Strong (Leiomyosarcoma Survivor)

“You have leiomyosarcoma. It is very rare and very serious,” my oral surgeon told me. “You need an oncologist immediately.”   

I had a slightly different experience than many first diagnosed with sarcoma — I had actually heard of the disease. A friend of the family had leiomyosarcoma, but we were not able to connect.

Instead, I sought out other people I knew well who had “cancer experience.” Friends whose family members had cancer. Several friends who had survived breast cancer. I even started a Christian Cancer Support Group in my church and had some very intimate conversations with others. But their experiences seemed to be only very loosely related to mine. Where were “my people?”

Then I read in our local paper about a fundraiser held in honor of the family friend with leiomyosarcoma. The proceeds were donated to an organization called Rein in Sarcoma.

That year, I rode the carousel at my first ever Party in the Park. I engaged in conversation with many sarcoma survivors, finding the community of cancer misfits I was seeking. I was almost giddy when I got home that night. 

Since then, I have found many new ways to be strengthened by the community of those with sarcoma. I crave the relationships in this community. We learn from each other. Even more than that, we hold each other up. We are in many ways, like family. Connected by some really crummy cells. We are a community of the rare.   

As I have heard said many times: “It’s like meeting a whole pack of unicorns when I was afraid I was the only one.”

I have had the pleasure for six years now of administrating a Facebook group for those with leiomyosarcoma. This group has become what many of those around the world with LMS call “a lifeline.” As with all Facebook cancer support groups, it allows people to learn what treatments are available, to share information on clinical trials, to get referrals to doctors specific to their needs, and to ask questions about side-effects and emotional issues. Most of all, it is a community of people across the globe who care very deeply about each other and who offer hope to those who are new on the journey and need to engage with someone who understands. 

The sarcoma community has become both my life’s work and my lifeline, and with good reason. 

Research conducted at the Cancer Support Community (which sponsors Gilda’s Club) has shown that “people who participate in support groups, either face-to-face or online, report significant decreases in depression, increased zest for life, and a new attitude toward their illness.” Community may not just energize, but according to a study published by the National Institute of health, “support groups may even have a positive effect on survival.”  

Every opportunity to participate in community is an invitation to be empowered, educated and energized. And maybe, just maybe, to live longer.  

If you are new to the Rein in Sarcoma community, welcome!  You are no longer alone. If you, like me, have been here a long time, thank you for being a friend. 

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In these days of Covid-19, the Rein in Sarcoma community looks different, but we are still here.

What could have become a pandemic pause has become a new opportunity as our Second Tuesday morning Talk and Time Together group moved to video calls. It enables those who can’t leave home, or live far away from the Twin Cities, to participate. We plan to merge technology and touch as we return to face-to-face meetings (when it is safe to do so) by including a call-in option for remote participation. Contact the Rein in Sarcoma office at (763) 205-1467 for more information on these chats or indicate your interest on the RIS Support Network form.     

Facebook groups have become stronger, and more interactive for many organizations. Rein in Sarcoma will launch a new group later this month, and we are eager to meet many of you as we share our stories of hope and learn from each other. Stay tuned for more information.

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