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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.

Education: Fulfilling the Mission

Dr. Christian Ogilvie

Dr. Christian Ogilvie

Sarina Morrison at the University of Minnesota Medical School

Sarina Morrison, sarcoma survivor

With the support of physician experts, Sarcoma Scholars, and patient and family volunteers, RIS raised sarcoma awareness among more of the medical community in May! On Tuesday, May 21, Dr. Christian Ogilvie presented to the soon-to-graduate physician assistant students at Bethel University. Dr. Ogilvie is Associate Professor of Orthopaedic Surgery at the University of Minnesota and Rein in Sarcoma Medical Advisory Board member. Because PAs will be employed in a broad range of healthcare areas, Dr. Ogilvie focused on more general education that applies across the variety of settings in which they’ll be engaged.

Following Dr. Ogilvie, Sarina Morrison eloquently shared her sarcoma journey that began when she was diagnosed with a soft tissue sarcoma at 23 years. Sarina said she feels very blessed to have had a doctor who recognized the seriousness of the growing lump in her leg and insisted she get an MRI, even though it was “probably just a cyst or injury from running.” Sarina shared the dramatic changes in her life following her diagnosis. She suddenly went from a very active, healthy young woman to a sarcoma patient undergoing chemotherapy, radiation therapy and surgery. After her talk, Sarina graciously offered to answer the students’ many questions, including how they can support their future patients. As a sarcoma survivor, Sarina shared with the students some insights on the “new normal” life that follows any cancer diagnosis - how her life has changed and some of the challenges she now faces.

On May 29, Mylan Blomquist and Taylor Weiskittel, RIS Maudlin Sarcoma Scholars at Mayo, planned and hosted the Mayo medical student sarcoma lecture. Dr. Brittany Siontis, Mayo Clinic Assistant Professor of Medical Oncology, began the hour with an excellent “Introduction to Sarcoma” presentation. Two of her important take-aways for the students were:

  • Recognition of suspicious lumps and imaging before biopsy can improve outcome
  • Early involvement of an experienced sarcoma center improves outcome and is strongly encouraged
Brittany Siontis, MD

Dr. Brittany Siontis

Sue Wyckoff

Sue Wyckoff

Pete Wyckoff

Pete Wyckoff

Sue Wyckoff shared her daughter Karen’s story of her four-year battle with synovial sarcoma. In many ways, Dr. Siontis had told Karen’s story; she was misdiagnosed, her biopsy was incorrectly read as a lipoma, and she was told she could wait several months until she got home to have the growth removed. When she got home and it was removed, it was a large synovial sarcoma. Many treatments followed, but she was able to go back and finish college and be a Lutheran Volunteer for a year before it returned in her lungs. She spent two more years undergoing rigorous treatments. Karen wanted physicians to:

  • Know sarcoma exists and do a proper diagnosis.
  • Listen to your patient. Even at 19 they are in charge of their treatment. As she told her doctor, he was the quarterback, she was the owner of the team and her parents were the fans.
  • Know your patient’s hopes and dreams and help them live as full a life as possible during treatment.

Karen had a dream of a world without sarcoma cancers. To that end, Karen wished to raise awareness and fund cures and shortly before she died raised $10,000 at the first Rein in Sarcoma Party in the Park. Sue closed with Karen’s words from an essay she wrote long before her sarcoma diagnosis, “I hope that when I die, I will be able to look back on a life that was fulfilling and was spent living, not waiting to die.”

Pete Wyckoff rounded out the program with an overview of Rein in Sarcoma and the work being done to fulfill the mission. He shared that over the past 19 years, the organization founded by Karen has raised more than $2 million for research and has grown to be the largest and best-known sarcoma organization in the Midwest.

Physician presenters at both education sessions highlighted the red flags of sarcoma and asked the students to consider sarcoma whenever they see a patient with a golf ball size lump. As a reminder, each student received the “Is It Sarcoma?” golf ball with attached red flags reminder card.

Thank you to all the presenters for sharing their time and expertise. Kudos to Marlene and Dave Dolney, Red Flags Committee members, and Dr. Wallace Boeve, Bethel University Physician Assistant Program Director, for arranging the Bethel University presentation.

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