“There are some who bring a light so great to the world that even after they have gone, the light remains.” Author Unknown
Rein in Sarcoma mourns the loss of two dear men from our community, Kevin O’Keefe, who passed away in January, and Perry Ford in February.
Kevin and Perry were active Rein in Sarcoma volunteers and committee members. These men advocated for improved outcomes in sarcoma treatments by way of their work in development, patient and family support, and community outreach. They organized fundraising events, supported peers in the sarcoma mentor program, spoke to medical professionals, and enriched our community with their positivity.
These men cared deeply about the Rein in Sarcoma mission and worked tirelessly to strengthen sarcoma education, support and research. As a community, we honor these men and celebrate their courage, tenacity, grit, humor and unending love. They were an inspiration to us all.
The Rein in Sarcoma community grieves with the O’Keefe and Ford families and hold you close to our hearts during this sorrowful time. We extend our gratitude to your families for sharing these wonderful men with us and commit to continue shining a light and advocating for improved outcomes, improved treatments, and cures for sarcoma.
– Vice President, Rein in Sarcoma – Lisa Griebel
The Rein in Sarcoma Patient Starter Notebook provides support, hope, information and valuable resources to newly diagnosed sarcoma patients. Rein in Sarcoma is excited to announce that the 7th Edition is now available. Complete the short RIS Support Network form and we will mail it to you (within the United States) at no cost, or use the link and password which will be emailed to you to view and/or downloaded the notebook from our website.
Volunteer, Elisabeth Will led the way in organizing the edits for the newest edition of our Patient Starter Notebook. The Notebook is the first introduction many newly diagnosed sarcoma patients have to our great organization and patients have told us that the notebook has been a valuable resource for them.
The patients spoke and we listened. At last summer’s Party in the Park, the Red Flags Education Committee administered surveys asking patients what information in the notebook was most useful to them. Surveys were also mailed directly to some patients who had received a notebook. Based on survey results, the committee decided to make changes to the notebook that would make it more helpful, informative and easier to navigate for newly diagnosed patients.
Here are some of the major changes and improvements we made to the 7th Edition of the Patient Starter Notebook.
- New therapies and current research are included in the notebook.
- Dr. Safia Ahmed provided a section on new radiation therapies for sarcoma.
- The Sarcoma Scholars wrote five articles with information about specific sarcoma subtypes: Ewing Sarcoma, Leiomyosarcoma, Liposarcoma, Malignant Peripheral Nerve Sheath Tumors (MPNST), and Rhabdomyosarcoma.
- The hospital resource sections were updated with current news about sarcoma doctors and treatments.
- A Regions Hospital resource section was added, similar to the University of Minnesota and Masonic Children’s Hospitals, Mayo Clinic – Rochester, and Children’s Hospital and Clinics – Minneapolis sections.
- We were able to list many more patient resources including:
- Organizations offering financial assistance to programs for children.
- An interactive national listing of sarcoma centers of excellence.
- A major new listing of sarcoma advocacy organizations across the country, including organizations that specialize in specific sarcoma sub-types.
- We also made certain that listed website links were up-to-date and the sites still useful.
We hope our updated Patient Notebook is better equipped to provide the information and support that sarcoma patients are seeking. If you have not yet received a notebook, have questions, or have feedback on the notebook, please visit the notebook page on our website, or call the Rein in Sarcoma office at 763-205-1467 or 1-844-727-2664.
Passionate sarcoma survivor and warrior, Amy Hoban, and Allison Mulcahy, who lost her mother to sarcoma, are co-chairing the 2019 Party in the Park. Amy has been a key contributor as part of the Patient and Family Support and PR/Marketing Committees for almost two years. Allison volunteered with family and friends as part of the 2018 Party in the Park logistics team headed by her father, Pat Minor.
Allison and Amy encourage one and all to come to the Kickoff Meeting, on Monday, March 18 at the Surly Brewing Co. It will be an energizing evening with sub-committees getting organized for Rein in Sarcoma's signature event. Bring family and friends. The Co-chairs and Party leadership team have some exciting updates to share. Please come early to eat in the restaurant, or take a Brewery Tour at 5:45 P.M. Attendees will have the opportunity to join a committee based on your interests and skills. Your RSVP helps us plan.
The following committees will organize:
- Public Relations
If you are not able to attend on March 18, but would love to help out, please email Connie Dow at email@example.com with your interests, skills, and/or committee you wish to support. We will keep you posted about the volunteer positions available before and during the event.
Please consider sharing your time and talents again this year for another successful event!
Amy Hoban and Allison Mulcahy, 2019 Party in the Park Co- Chairs