Friday, January 28, 2011

Talk on sarcoma Feb. 11 in LA

Andrew Hendifar, MD, will discuss the latest in the diagnosis of and treatments for soft-tissue and bone sarcoma Feb. 11 at the Cancer Support Community, Benjamin Center, 1990 S. Bundy Drive, Suite 100, Los Angeles 90025. The lunchtime talk is free, but call 310-314-2555 for reservations.

Thursday, January 27, 2011

Our executive director reflects on our changes

As the Sarcoma Alliance enters its 12th year, I'm reflecting on my exciting and rewarding six years as executive director. When I started, the Alliance was essentially run by a volunteer Board of Directors made up of family and friends of the founders, Suzanne Leider and Wendy Sommers. The organization had, at times both painfully and happily, grown beyond what an all-volunteer “staff” could handle. I was hired to take much of the day-to-day operations off the shoulders of the board and to grow it to better serve those affected by sarcoma. The transition from an all-volunteer organization to one with paid staff has been an adventure for everyone involved.

The board was, and continues to be, incredibly diverse in their skills and all extremely committed and passionate about the organization. At first, I was watched like a hawk. It was difficult for board members to let go of something that had been such an all-consuming part of their lives. As time went on and the Alliance continued to be effective and successful, my daily phone calls and contact became less frequent.

We now have a part-time office manager, Pam Cresta, and we pay a couple of others, as needed, for computer help and other specialized skills. Although the staff does a lot, the Alliance still depends on the skills and time of board members and other volunteers. It is always interesting working at the pleasure of the board while, at times, having to remind them of projects that can be done only with their help. Who works for whom is a question we are constantly trying to answer.

We are proud of the many accomplishments during the past six years. We are now on Facebook and have an active and vibrant blog. We have made major changes to both the content and look of our website. Our Peer-to-Peer Program, begun almost four years ago, has grown to include people from all 50 states and 21 countries. We have partnered with a number of organizations so our voice is better heard in Washington as the debate continues about health-care coverage and funding for research of rare diseases such as sarcoma.

The last two years have been especially challenging for the Sarcoma Alliance, as they have for most individuals and organizations, small and large, in the U.S. We have tried to find ways to cut costs without impacting any of our core programs and services. We have cut back on travel to conferences that we use to educate providers about what we do and how we can help them help their patients. The mailed, paper newsletter was the single greatest cost. We are beginning to use an electronic emailed newsletter and report on all of our activities and services on our blog. I hope you visit this blog and our website on a regular basis to see the changes. Finally, please take a moment to remember all those who work so hard to help, and do what you can to support us. We will continue our unwavering focus to provide guidance, education and support to everyone affected by sarcoma. Thank you.

-- Arthur Beckert, Executive Director

Saturday, January 1, 2011

Running for support

"This winter, I am temporarily trading my paddling arms and my steering blade for my legs and a pair of running shoes," writes Aimee Spector, co-captain of our Ocean of Hope teams. As an O2H member, she will compete Jan. 15 in the Avalon 50, "one of the country's most challenging and scenic 50-mile runs."

The run will be on Catalina Island, near Los Angeles. Race Director Mike Bone promises:
No cars, no smog, just great terrain, incredible views, fascinating historical sites, a well-organized race, nice people, great food ... and even an occasional buffalo sighting.
At the end of November, Aimee wrote:
I have 50 more days to train, 50 miles to run and my goal is to raise $5,000. All of the money I raise will fund second-opinion grants, which is one of the most crucial parts of saving a sarcoma-cancer patient's life. Running 50 miles is easy compared to what a cancer patient has to go through.
To support Aimee and sarcoma patients, click here.
-- Suzie