This Foundation could not possibly list every phone call we make, every email we send or every function we attend in the name of advocating for more and better LMS research. However, this page will be used to give a sampling of the work we are doing.
And LMSdr advocates are proud of the accomplishments of others who are not members of this Foundation but who have found ways to advocate for the LMS community. You will see a special section at the bottom of this page noting some of those special efforts.
Patient Advocacy Presentation
Bruce MacDonald gave this Patient Advocacy Presentation at the JHYSF sponsored "Meet the experts" Seminar in November 2008. He dedicated the presentation to Suzanne who was the ultimate patient advocate!
HERE to open the Power Point Presentation.
Ongoing Communications with Ariad Pharmaceuticals re AP23573
LMSdr representatives are currently working with Ariad regarding problems brought to our attention by patients on prior Ariad clinical trials. Ariad representatives have been receptive to the concerns of LMS patients as expressed to them by LMSdr. Talks are ongoing between Ariad and LMSdr, and Ariad informs us that the final decision is not yet made for the next trial design. Further communications on the subject are planned between LMSdr and Ariad.
A more detailed report will be posted prior to Ariads next planned clinical trial for AP23573.
ASCO - American Society of Clinical Oncologists.
Atlanta, Georgia June 2006
LMSdr representatives attended this 5 day seminar to help facilitate and enhance dialogue between this foundation and members of the medical and scientific community. Important contacts were made with pharmaceutical companies and medical and research personnel. These contacts are being followed up on by Foundation representatives since their return from the seminar.
The Stanford Microarray Project
LMSdr representatives keep open communication with Dr. Matt Van de Rijn at Stanford and with his Assistant Cheng-Han Lee to provide helpful information that might be useful to the microarray project. Look under the menu tab "News" for the latest update on the Stanford microarray project.
This company was discovered by LMSdr representatives attending ASCO. Antigenics is a company working on individualized cancer vaccines. Antigenics representatives discussed with LMSdr representatives the possibility of future trials of this individualized vaccine for sarcoma patients. Communications with this company are in the early stages and more information will be posted as possibilities advance.
Advocates Outside the Foundation
Thanks for your help!
LMS Patient Pamela Sprott, Valencia, CA is advocating for Sarcoma
Pamela partnered with the American Cancer Society to represent her district as a Legislative Ambassador at the Celebration on the Hill 2006.
"On September 19-20, 2006, nearly 4,000 American Cancer Society "Celebration Ambassadors" gathered in Washington, DC for Celebration on the Hill 2006—a unique event that showed our country's lawmakers how the American Cancer Society is waging the fight against cancer in communities nationwide. Launched in 2002, Celebration on the Hill put a personal face on the fight against cancer. Ambassadors from every single legislative district formed an impressive grassroots force that successfully communicated the American Cancer Society story, convincing our national leaders to increase their commitment to battling the disease on all fronts—research, education, advocacy and patient services."
To learn more about this advocacy, or to help Pamela, contact her at email@example.com
CancerAdvocacy.org : Cancer Survival Toolbox - See more helpful links on our Support page.
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Last Edited -
27 January 2010 23:15 pm