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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.

2021 Party in the Park(ing) Lot and Fall Fundraiser Auctions Need Your Help

2019 PIP auction tent

Auction at the Fall Fundraiser

While we recognize the difficult economic circumstances COVID-19 has brought to many people and businesses, the decision has been made to move forward with silent auctions again in 2021 at both our summer and fall events. Many businesses have still shown growth in 2020, so we’d like to focus our solicitation efforts in the industries listed below.

Whether you ask for a gift card, a service, or a product, your participation is critical to a successful auction and to raising more funds to support the RIS mission. As always, a Gift-in-Kind form is required and can be found here. Now, more than ever, your commitment and conviction are essential to our mission. You can also modify the sample auction item solititation letter for your asks.

Additionally, if you patronize a certain business – coffee shop, dry cleaner, salon, gym, pet care establishment etc., please consider asking them for a donation while recognizing it might have been a tough year. Remember sarcoma does not stop for COVID-19 or recessions, but only from research, early diagnosis and treatment. You play a role in making that happen.

Here are the businesses we want to target for auction donations:

Fitness Equipment, especially the bike industry- think Peloton
Furniture and home décor
Home improvement and contractors
Landscaping and yard care services
Garden centers and suppliers
Appliance stores
Game stores and game companies (fun family night basket theme idea)
Grocery industry and stores
Liquor industry and stores
Pet industry

Two additional categories we want to explore are the artisan craft movement and Made in Minnesota. So if you know canners, potters, painters, weavers, quilters, woodworkers, jewelers…, you get the picture, those donations are most welcome.

We want to stay away from the restaurant sector and theater sector because they have been hurt the hardest. But this year more than ever, we need you to work your social network of family, friends, colleagues, Facebook and ASK ASK ASK.

If you have any questions, please contact our auction manager, Jason Patalonis at 651-336-4684 or by email.

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