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Connecting with Internal Medicine Physicians

Dick DeBlieck - Red Flags Volunteer

Marlee Brice - Red Flags Volunteer

Red Flags Education Committee volunteers Marlee Brice, Dick DeBlieck and Judy Jones, joined Naomi Bowman in representing Rein in Sarcoma at the Mayo Clinic Internal Medicine Board Review course exhibit in June. The week-long course helps prepare physicians for their initial or re-certification examinations as well as provide a review for daily practice.

Approximately 240 attendees, including the 45 presenters, traveled from all over the United States and Canada for this intense course. During our time there, we spoke with more than 60 attendees and gave out 57 “Is It Sarcoma?” golf balls with the attached red flags professional card.

Throughout our conversations we learned physicians’ experiences with sarcoma ranged from those who knew very little about it to those that had seen patients with sarcoma cancer. Interactions were often quick - highlights included:

  • visiting with a Mayo physician recruiter
  • information that the new CEO at Mayo/Scottsdale is a sarcoma specialist
  • a Mayo internist soon moving to MD Anderson in Texas will spend his first month working with sarcoma
  • a Minnesota internist who was a volunteer for the State Fair sarcoma survey a few years ago
  • two physicians who received the golf ball returned later to talk more
  • one physician from Wisconsin let us know she’d already shared the info with colleagues
  • a retired physician who really liked our golf ball initiative and praised Rein in Sarcoma for great work
  • physicians who plan to visit our website - one will download our Sarcoma Patient Notebook
  • several physicians thanked us for being there and many expressed their gratitude for Rein in Sarcoma’s commitment to education

With the dedication and participation of our wonderful volunteers, 60+ additional physicians now know about the red flags of sarcoma. If they all do as we requested, they’ll put their golf ball in a spot where others will see and learn from it!!!

Increase awareness. Increase survivors.

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Featured Volunteer Needs – June 2019

RIS Volunteers
RIS depends on volunteers to make our mission a reality. Current volunteer opportunities include:

March in a Parade to Raise Sarcoma Cancer Awareness

Do you enjoy a good parade? Always wanted to ride in a convertible, wave and throw candy to the crowds? You have two upcoming opportunities:

Thursday, June 13, 5:00 p.m. - Fridley 49er's Days Parade - right in our own backyard (RIS Office is in Fridley).

Sunday, July 14, noon - Rein in Sarcoma will be marching in the Monticello Riverfest Days Parade.

Let us know if you'd like to join us.  Contact Kraig Kuusinen by email.

Public Relations and Marketing Committee

Marketing Committee Member -
Rein in Sarcoma’s Marketing Committee members will develop detailed plans, content and make sure that our marketing tools follow the organization’s brand. Marketing tools include but are not limited to: website, newsletter, social media, videos, merchandise, and print materials.

For more information about this volunteer position contact Connie Dow at Ph: 844-727-2662 ext 3 or by email.

Apply for this position at: New Volunteer Form

Patient and Family Support Committee

Rein in Sarcoma is looking for compassionate volunteers to help us better serve the needs of sarcoma patients and their loved ones. Our Patient and Family Support Committee reaches out to sarcoma patients and their loved ones by providing peer-to-peer mentoring, organizing social gatherings for those affected by sarcoma, providing gift bags for newly diagnosed and relapsed sarcoma patients, and by providing informational notebooks about sarcoma with hospital resources for sarcoma patients. This committee has monthly meetings and attends gatherings throughout the year.

For more information about this volunteer position contact Connie Dow at Ph: 844-727-2662 ext 3 or by email.

Apply for this position at: New Volunteer Form

Red Flags Committee

The Rein in Sarcoma Red Flags Committee is looking for volunteers who can help get the word out and educate the public about sarcoma cancers. This committee works with the Sarcoma Scholars, updates  the Patient Starter Notebook, attends medical conferences and other events to educate attendees about sarcoma cancers. Volunteers for the Red Flags Committee will attend events and meetings throughout the year.

For more information about this volunteer position contact Connie Dow at Ph: 844-727-2662 ext 3 or by email.


Revolutionary Research at Mayo Clinic

Dr Brittany Siontis

Dr. Brittany Siontis, Mayo Clinic Physician and Researcher

by Miranda Mead

Brittany Siontis spent her first six months as a first-year fellow at the Mayo Clinic working closely with sarcoma cancer patients. Siontis was fascinated with the variety of sarcomas and loved treating patients of all ages. But her continued frustration of, “not knowing,” drove her into sarcoma oncology research to devise solutions to better treat sarcoma.

In the beginning of her research, Siontis asked, “Is there something that we can test in the blood to figure out what a patient’s cancer is doing?” Siontis chose to focus on circulating tumor DNA, because these markers circulate in the blood and are specific to each patient’s cancer. Developing new technology around these blood markers would allow doctors to determine what the cancer looks like without doing a biopsy. Biopsies are invasive, can be painful, and pose a high risk for infection and bleeding.

As an example, there is a specific type of lung cancer that has a mutation called EGFR. Scientists can look in a patient’s cells to see if the EGFR mutation is circulating in the blood, which would indicate how much cancer is present. Similarly, in Ewing Sarcoma – an aggressive bone/soft tissue cancer – there is a marker present in the blood called pathognomonic translocation. Scientists can pick out this biomarker to know how to better treat each patient.

Scientists know there are specific DNA markers associated with specific cancers, such as Ewing Sarcoma. The hope is to take that knowledge and apply it more broadly to other sarcoma cancers. Siontis started asking, “is there enough circulating tumor DNA that we can even detect it in the blood?”

To start the process, if a patient had a biopsy or surgery done on his or her tumor, Siontis’ team conducts comprehensive genomic sequencing on a piece of the tumor. This process includes looking at the tumor’s DNA and RNA to see if there are any genetic changes. Since each tumor is going to have its own mutations, doctors can give the patient individualized care based on the tumor’s present biomarkers.

In addition to genomic sequencing, Siontis’ team is working to determine the amount of circulated tumor DNA needed to accurately monitor a patient’s tumor. Prior to treatment, blood is taken to measure circulating tumor DNA. While the patient goes through treatment, doctors can see how much circulating tumor DNA there is with each blood draw. In conjunction with imaging, the circulating tumor DNA can help determine how the cancer is responding to the treatment. This combination of images and blood work also helps with early detection of cancer recurrence, significantly improving survival rates.

Siontis and team are doing exciting research that has the capability to positively impact how sarcoma cancers are detected, monitored and treated.

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