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Update on the Karen Wyckoff Rein in Sarcoma Fund Peter Wyckoff President, Karen Wyckoff Rein in Sarcoma Fund
[Editor's Note: This is another article in our ongoing "An Update on" series. These articles are intended to bring awareness to the sarcoma community of the goals, activities, and resources of various sarcoma advocacy organizations. This issue's article is focused on the Karen Wyckoff Rein in Sarcoma Fund.]
Since then her friends and family and, increasingly, sarcoma patients, sarcoma survivors and the families of those who have died of this disease, have worked for the past seven years to keep her vision alive.
The KWRISF was created in 2004 as a Minnesota non-profit organization to continue the mission that Karen first established:
We have taken major steps forward in the fight against sarcoma. We have expanded our work in the upper Midwest to support research that is focused on finding a cure for sarcoma cancers. We increased physician and public awareness of these cancers and increased our support to survivors, loved ones, and those who have lost someone to sarcoma. Over the past 7 years we have raised over $300,000 to support the activities of the KWRISF Fund.
The Rein in Sarcoma Event
Rein in Sarcoma 2007 was also the official closing event of the 2007 Team Sarcoma Initiative's International Sarcoma Awareness week had more than 150 sarcoma survivors and their loved ones “rode in circles” in solidarity with groups across the world to find a cure for sarcomas. Our 2008 Event to be held on July 21st will also be an official closing event of the 2008 Team Sarcoma Initiative's International Sarcoma Awareness week.
Funding Research As in past years, a significant portion of funds raised by the Fund in 2007 were used by the sarcoma doctors and researchers at the University of Minnesota Cancer Center to support projects focused on the detection, treatment and evaluation of sarcoma cancers. Some of our earlier grants paid sizable dividends in 2007.
One of our initial $10,000 research project seed grants, made in 2004, led in 2007 to an award from the National Institutes of Health (NIH) in excess of $1,700,000.
Without the preliminary work funded by our "seed" grant, the University of Minnesota Cancer Center would have not been in a position to apply for this very significant research funding which is now the largest osteosarcoma study in the country. The study is led by Dr. Logan Spector. For more information about this study and other KWRISF grants click here.
In 2007, the KWRISF made the largest grants in its history for Sarcoma Cancer Research at the University of Minnesota Cancer Center. Sarcoma research grants committed by the Fund in 2007 totaled $164,006.
Beyond the dollars committed the Fund has also been the catalyst for greatly expanded sarcoma cancer research and treatment at the University of Minnesota and its Medical Center. For example in 2001 there were 7 clinical sarcoma faculty at the U of M Medical School, now there are 12 (5 of which are a direct result of KWRISF funding). In 2001 there were no scientific sarcoma faculty, now there are 5 (4 funded through KWRISF) plus 5 new scientific collaborators including 2 which are KWRISF supported, in collaboration with two other funds, as the first all University sarcoma “brainstorm awards.” Simply put, the Fund has been the major impetus to encourage a truly dedicated faculty to make sarcoma treatment and research a major priority of the University of Minnesota and its Medical Center.
Sarcoma Education We have also made progress in advancing the other two objectives of the Fund: In pursuit of the Fund's education mission, we have funded a "lumps and bumps" seminar for 3rd year students at the U/M medical school.
The first Grand Rounds on sarcoma cancers called "Lumps and Bumps: Avoiding Pitfalls in Management” was held in 2007 at both the University of Minnesota Medical Center and the Minneapolis Veteran’s Hospital. In addition the Fund has underwritten a video of the Grand Rounds for viewing by practitioners statewide as part of a continuing medical education program. Click here to view the PowerPoint with Dr. Edward Cheng, orthopedic surgeon, professor, the Mairs Family Chair in Musculoskeletal Oncology and a KWRISF Board member. The new Sarcoma Information Center at the University of Minnesota Cancer Center is also funded and sponsored by Rein n Sarcoma.
Patient Support
KWRISF has also hosted three "RIS Gatherings” throughout the metro Twin-Cities Area. These are unique opportunities for sarcoma patients, survivors and loved ones to share the sarcoma journey, to learn and be encouraged.
While the $300,000 raised by the Fund during these six years is significant, the money is only a small part of our story.
We are the story of each sarcoma survivor who brings a new level of energy and hope to all those touched by sarcoma. Research, fellowship, support, and caring are a powerful mix. That excitement is leading to plans in 2008 and beyond for more patient support, more research, and new ways to communicate with medical personnel about sarcoma. None of this would have been possible without the efforts hundreds of volunteers and the support of over 2,000 contributors, supporters, corporate sponsors, sarcoma patients and loved ones.
For further information, please visit the Karen Wyckoff Rein In Sarcoma Fund website or contact Peter Wyckoff.
V5N2 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative. |
The
The 7th Annual
Rein in Sarcoma event was held last July event at Cafesjian’s Carousel and
Como Park Visitor’s Center in St. Paul raised over $65,000. Our objective
was to create a lively, affordable, family-oriented, fun evening for folks
of all ages. Over 800 people from five states attended. In addition to
unlimited, free rides on the Cafesjian’s Carousel (the genesis of the word
"rein" in our organization's name), it had a variety of entertainers,
including nationally know comedian, juggler and sarcoma survivor
Prior to the evening's
entertainment and activities, Rein in Sarcoma hosted a picnic at the Como
Park picnic grounds for sarcoma patients, survivors and their families and
friends. Over 400 people including 71 sarcoma patients and survivors
attended the picnic.
In support of sarcoma
patients, survivors and loved ones, the KWRISF has published in 2007 the
RIS Sarcoma Patients Starter Notebook. As a result of the iSPAN
meeting Boca Raton, Florida in 2005 and with the support of the Amschwand
Sarcoma Cancer Foundation (Texas) (who developed a similar guide in 2005)
and the Sarcoma Alliance (California), KWRISF developed and printed the
Notebook for patients and their families. It is currently is
being distributed to newly diagnosed sarcoma patients at the University of
Minnesota Medical Center and most other Twin Cities Hospitals. As a result
of Association of Cancer Online Resources (ACOR) and Electronic Sarcoma
Update Newsletter (ESUN) publicity, the Notebook has been sent, free
of charge, to sarcoma patients and loved ones throughout the country. A
second edition is now under development. The Notebook can be
ordered on the KWRISF
