The sarcoma experience can be lonely. It can seem family and friends don’t understand what you are going through. And likely they don’t. If you only had a friend who truly understood.
Here we are! Rein in Sarcoma sponsors Second Tuesday Talk and Together Time — a time for sarcoma patients/ survivors, any type and at any stage in their journey, to get together for conversation and friendship.
Facilitated by trained sarcoma survivors, we start the group with a check-in, if you wish to share. We invite questions, share our stories, frustrations, hopes, and fears. We find common bonds, and we laugh often.
Caregivers are also welcome to the group when accompanied by a sarcoma patient/ survivor. We have a call in option for anyone not able to travel to the RIS office.
Second Tuesday Talk and Time Together meets 10:00 -11:30 a.m. in Rein in Sarcoma’s office: 7401 Central Avenue NE, Fridley, MN, 763-205-1467. For more information, or to be added to our email list for meeting reminders, contact Vicki Strong. Join us – the coffee pot will be on!
February 28 was Rare Disease Day, hosted by the University of Minnesota at the McNamara Alumni Center. Jim Cloyd, PhD, professor and director of the Center for Orphan Drug Research at the UMN College of Pharmacy, kicked off the morning by asking each of the participants to rise and tell their story of why this day matters.
Rein in Sarcoma was among the 22 rare disease patient advocacy groups with display tables. This gave us the the opportunity to share our stories and mission. There were 38 scientific posters describing the work of some of our brightest working in rare disease research. Graduate students Kelsie Becklin and Rebecca Madden hosted posters on osteosarcoma and Ewings sarcoma.
Jakub Tolar, MD, PhD, the Dean of the UMN Medical School, introduced the formal program with a personal message. He also showed a video greeting from UMN President Joan Gabel and a personal message from Senator Amy Klobuchar. Erica Barnes introduced us to the Rare Disease Advisory Council, founded less than a year ago.
The keynote, “The Rare Disease Treatment Approval Process: Balancing Gold Standard Evidence with Patient-Centered Flexibility” was presented by Sarah Wicks JD, MPH, an associate at Hyman, Phelps & McNamara, P.C. Her dedication to furthering the involvement of patients in rare disease drug development, as well as advancing and accelerating the development of new breakthrough therapies for those with rare conditions, summarized why all of us were there.
Thank you to all our RIS community members who could attend with us, volunteer, and advocate. Join us at next year’s event as we continue to raise awareness and improve outcomes for more patients and families.
The Rein in Sarcoma Board of Directors reviewed the progress and impact of the organization during 2019 and approved several key items, and elected new board members and officers during the Annual meeting on January 27, 2020. Treasurer, Tom McCarthy, reported that the organization had significant growth in donor support and has maintained excellent financial health. Rein in Sarcoma is able to expand the impact of its three pronged mission of education, patient and family support, and funding sarcoma cancer research after a very successful year of donor support. More details to come soon with the 2019 Annual Report.
The Board approved $150,000 in new Sarcoma research grants at the University of Minnesota Masonic Cancer Center. The approved 2020 budget also includes funding RIS Sarcoma Scholars at both at the University of Minnesota and Mayo Medical Schools, and a significant increase in education program spending, involving the Hallie Anne Brown Educational initiative (Natural Language Programming), expanded presentations to medical professionals, and a full-time Education Programs and Communications Manager position.
The Board thanked Debra Cossette, Dr. Larry Seymour and Allan Swartz as retiring board members. Our Nominating Committee presented three excellent candidates for board membership who were elected during the meeting.
Elected board officers:
President: Blake Hastings
Vice-President: Eric Lien
Secretary: Mitch Atherton
Treasurer: Tom McCarthy
Newly elected board members:
Linda Andrean retired from the University of Minnesota after 30 years as a department administrator, mostly in the academic Health Center. In 1995, she was hired as the manager of the Cancer Protocol Review Committee as the Center was seeking the NCI Comprehensive Cancer Center designation.
Hearing about Rein in Sarcoma, she stopped by the 2019 Winter Gathering to find out more about the organization. In talking with members, she decided it would be an organization she would be interested in pursuing. The Education Committee was of particular interest and she has been volunteering with the committee and is now a co-chair.
Brendan Dillon is a Vice President of Global Inventory Management for Target Corporation and previously held various leadership positions at Target. Brendan is motivated to leverage his professional experience to help expand Rein in Sarcoma's impact for sarcoma cancer patients, after seeing his neighbor Blake Hastings and family deal with Blake's sarcoma cancer diagnosis and treatment.
Michelle Kolling is returning to serve on Rein in Sarcoma's board. After a career as a commercial real estate broker, she recently completed training to be an end of life doula. Michelle, who lost her husband Brett Dale to sarcoma cancer in 2011, has volunteered not only as a RIS board member, but as past Red Flags Education Committee Co-Chair, and as a member of the original strategic planning committee. Most recently, Michelle has focused her RIS volunteer time on patient and family support.