Karen Wyckoff Rein in Sarcoma

What it reported doing in 2024

Rein in Sarcoma (RIS) was started in 2001 by Karen Wyckoff, a 25-year-old Synovial Sarcoma patient. As she fought this rare cancer, she thought there were things that needed doing to increase the quality of life and odds of survival for all sarcoma patients. As she started the organization, she developed the mission as it still remains today: We are dedicated to educating the public and medical community about sarcoma, supporting sarcoma patients and their loved ones, and funding research directed toward developing new treatments and finding a cure for sarcoma cancer. Research for Sarcoma Cancer: RIS has partnered with many top-notch research institutions including: University of Minnesota, Mayo Clinic, Children's Minnesota, University of Calgary, Case Western Reserve, University of Michigan, and Aveni Foundation. RIS has funded seed money of more than $2.5M in high impact and collaborative research, which has generated more than $13M in additional support. Ninety-one research funding awards have been made to date. Education: RIS has established and expanded its Sarcoma Scholar Program to educate Medical Students and Advanced Practice students about sarcoma. This program began in 2009 with 2 scholars participating from the University of Minnesota and has now grown to 16 scholars from across the country in 2024, participating from University of Minnesota, Mayo Clinic Alix School of Medicine, University of Florida, University of Michigan, University of Iowa, Winona State University, Medical School of Wisconsin, and University of Wisconsin-Madison. Scholars educate their peers and public about sarcoma, complete sarcoma related projects, and go through a year-long sarcoma education program offered by RIS and sarcoma experts, specialists, and mentors. In addition, RIS provides free Patient Education Sarcoma Guidebooks to newly diagnosed patients and their caregivers. Guidebooks are also sent to sarcoma centers across the nation for distribution and are available for free download on the RIS website. The 9th Edition Guidebook was completed in 2024. Other educational activities include RIS participation in annual sarcoma related conferences, presenting and tabling opportunities to increase education. RIS has a YouTube channel that houses patient stories and educational videos. Patient and Family Support: Each year, RIS holds a Party in the Park event which is free to sarcoma patients, family members and those who have lost a loved one to sarcoma. Other patient and family support activities include peer to peer mentorship from other sarcoma survivors, Tote Bags of Hope filled with items for newly diagnosed and/or hospitalized patients, an active social media group for sarcoma patients and loved ones, Microgrants for patients in need of financial support during treatment and an in person monthly support group. Rein in Sarcoma is the largest and most well-known sarcoma foundation in the Midwest and continues to expand their services and reach nationwide.

Financial Efficiency

• Mission deployment rate: 67.7%; rating input score 68
• Program expense ratio: 54.7%; rating input score 55
• Fundraising efficiency: $3.9 raised per $1 spent on fundraising; rating input score 12; 12th percentile among comparable filings

Transparency & Controls

• Consistency checks: 93.8%; rating input score 94; 24th percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: Limited
• Grant itemization coverage: 66.6%; rating input score 67; 31st percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 6 of 8 controls in place; rating input score 75
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: -20.8%; rating input score 9; 9th percentile among comparable filings
• Total-asset coverage ratio: 1.57; rating input score 57; 57th percentile among comparable filings
• Liabilities to assets ratio: 0.05; rating input score 52; 52nd percentile among comparable filings
• Officer compensation ratio: 17.4%; rating input score 18; 18th percentile among comparable filings

Growth

• Program expense growth: 4.6% per year; rating input score 100; 40th percentile among comparable filings
• Revenue growth: -1.2% per year; rating input score 0; 11th percentile among comparable filings
• Asset growth: 5% per year; rating input score 100; 39th percentile among comparable filings