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A Gathering of Advocacy Groups Earlier this week, we received the following invitation and attachment to an upcoming meeting of sarcoma advocacy organizations. We are publishing this material as we want to encourage you to contact any of the sarcoma organizations that you have knowledge of and encourage them to attend and, equally important, to suggest to them issues and ideas that you believe should be discussed when they meet in November.
In the spirit of cooperation,
Bruce Shriver
Collaboration Summit for Directors of Sarcoma Patient Advocate Organizations
November 19th, 2005, At the CTOS conference. Boca Raton, Florida
Dear fellow Sarcoma Advocates,
Over the last five years, multiple groups and foundations have sprung up in the sarcoma community. This workshop is to support and strengthen all our mutual efforts & effectiveness.
For the first time, the directors and key leaders of sarcoma advocate foundations and organizations will come together to:
Whether you can attend or not, we want everyone’s involvement! Please complete by November 1st the enclosed:
We will phone all of you in a week to answer any questions. More details will be forthcoming, but due to the Thanksgiving holiday, make your travel plans as soon as possible. This is an exciting opportunity!
In Unity,
An Edited Portion of the Attachment Follows Who should attend?One to two key representatives of a non-profit organization created for sarcoma advocacy. All foundations focused on any type of sarcoma are encouraged to attend.
Where & when is this workshop?Boca Raton Bridge Hotel (within walking distance to the CTOS conference). Saturday, November 19th, 2005, 8:30 am to Noon. This does not conflict with attending the other CTOS sessions.
Who is sponsoring this?Many sarcoma leaders have voiced a need for such a meeting. Several volunteers from multiple organizations have contributed to make this meeting become a reality. A neutral facilitator will moderate this workshop.
Supporters: Arthur Beckert, Director of Sarcoma Alliance Jody Cummings, Director of Sarcoma Foundation of America Gilles Frydman, Founder of ACOR, Association of Cancer On-line Resources, Bruce Shriver, Founder of Liddy Shriver Sarcoma Initiative and ESUN, Electronic Sarcoma Update Newsletter.
How can ALL organizations participate? By November 1st:
Do I need to register for the Collaboration Summit?Yes, contact Sharon Anderson @ 650-994-2748 or by e-mail. The Collaboration Summit is free. To attend the CTOS conference sessions, you must register & pay a fee.
What are the recommended travel arrangements? The CTOS website has lodging reservations for the Boca Raton Conference Center, where the conference is located. Alternative lodging is avail at Rates of $99 a night if booked on Expedia.com at the Boca Raton Bridge Hotel (walking distance to the CTOS conference). The airport closest to Boca Raton is Fort Lauderdale. Map of Boca Raton. Due to the Thanksgiving holiday, make your travel plans ASAP!
Contact Sharon Anderson or Arthur Beckert to register and complete a pre-meeting survey, phone interview and directory submission.
Collaboration Summit Survey: Directors of Sarcoma Advocate Organizations Please take this opportunity to join this collaborative effort to define mutual issues and goals for the sarcoma advocate community. This information will be compiled into a simple list of the most critical issues you feel that the sarcoma groups should focus collaborative efforts on. The list will be presented at the Collaboration Summit for the Directors of Sarcoma Advocate Organizations at the CTOS conference Nov. 19th, 2005. This data will be a critical starting point for our discussions and decisions.
I need this survey back by Nov. 1st. I will email back the results & along with a directory of organizations to each group by Nov. 10th. Names will not be associated with any of the survey responses.
In Unity,
Sharon Anderson MSW Sarcoma Patient & Advocate Collaboration Summit Survey: Directors of Sarcoma Advocate OrganizationsPlease check the top 3 areas of advocacy you feel are most important for all sarcoma foundations and groups to join forces and work together on:
q Research – increasing studies and clinical trials q Sarcoma tissue bank for researchers q Sarcoma patient registry for researchers q Funding for sarcoma research q Legislative lobbying q Patient education, support and outreach q Standards of care for all sarcoma treatment q Other:
About the 3 areas you feel are most important, please state more specifically: What are the critical issues & needs? What would be your ideal goal or outcome? What would be needed to meet this goal?
Would your organization be interested in participating in on-going communication & collaboration efforts with the other sarcoma advocate directors? If so, how?
Other comments/suggestions:
Thank-you & please have this returned before Nov. 1st to:
Sharon Anderson MSW Sarcoma Patient & Advocate
Sarcoma Advocate Organizations DirectoryName of organization: Website: Non-profit status since:
Public Contact Info: Name/title: Address: Phone: Fax: Email:
Director: Address: Phone: Fax: Email: Services provided (check all that apply)
Description of your organization’s mission, goals and focus: Description of your organization’s accomplishments: Description your organization’s events: Recipients of your organization’s funds: End of Attachment
V2N5 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative |
