Sarcoma Awareness Month

U.S. Kathy Castor, D-FL, has introduced a resolution, H.RES. 78,  to support the designation of July as Sarcoma Awareness Month. We are grateful that Reps. Zoe Lofgren, D-CA, and Beto O’Rourke, D-TX, have cosponsored the bill.

But we need many more cosponsors! We are asking anyone affected by sarcoma — —survivors, families, friends and health-care professionals — —to contact their U.S. representatives. If you don’t know who your representative is, you can find out here: http://www.house.gov/representatives/find/

The resolution is in the Oversight committee now. Here are the members:  http://oversight.house.gov/committee-members/ If you live in one of their districts, we could really use your help.

Emailing, writing and calling your representative will be the most effective. You may need to do all three! You can even ask for an appointment to speak to them or their staff. This is an excellent chance to talk to Congressmen and women about sarcoma.

We have a better chance with Democrats, but we’d love bipartisan support. Here’s a newspaper editorial explaining why the Republican leadership in the House won’t support this resolution: http://www2.tbo.com/news/opinion/2012/aug/28/please-dont-punish-me-for-national-banana-bread-da-ar-476227/

Here’s a sample letter:

Dear Rep. [name],
I would be very grateful if you would co-sponsor House Resolution 78 to designate July as Sarcoma Awareness Month.

Sarcoma is a cancer of connective tissues, such as nerves, muscles, joints, fat and bones. It can arise anywhere in the body at any age, from newborns on up. Although rare in adults, this cancer represents 15 percent of all childhood cancer cases.

[Explain your personal connection, such as being a patient, family member or friend. If you live in the same district as a sarcoma center, please mention that, too.]

Sarcoma nonprofits and physicians support this resolution. If we had Congressional recognition, it would be easier to get sarcoma added to calendars and other lists by organizations, institutions and the media.

Awareness matters. Many sarcoma patients have never heard of anyone else with their cancer. They— and their health-care providers— may not know all of the treatment options or that nonprofits can help.

I will follow-up this letter with a phone call. Please help us by supporting HR 78!

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Here’s what House Resolution 78 says:

Expressing support for designation of July as National Sarcoma Awareness Month.

Whereas sarcoma is a cancer of connective tissues, such as nerves, muscles, joints, fat, bones, and blood vessels, and it can arise anywhere in the body;

Whereas more than 13,000 people in the United States were diagnosed with sarcoma last year, more than 5,000 died, and 50,000 are struggling with the disease at any one time;

Whereas 1 percent of the cancers diagnosed in adults and 15 percent of cancers diagnosed in children each year are sarcoma;

Whereas more than 50 subtypes of sarcomas have been identified;

Whereas the National Cancer Institute recognizes that sarcoma is often misdiagnosed and underreported; and

Whereas July would be an appropriate month to designate as National Sarcoma Awareness Month to raise awareness of the disease and encourage more individuals to get properly diagnosed and treated: Now, therefore, be it

Resolved,

     That the House of Representatives supports the designation of National Sarcoma Awareness Month.
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We reached our goal of 1,000 signatures on a Sarcoma Awareness petition: http://www.thepetitionsite.com/788/428/730/name-july-as-sarcoma-awareness-month/
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In November 2007, 20 advocates met at the Connective Tissue Oncology Society www.ctos.org meeting in Seattle to build cooperation among sarcoma nonprofits. We agreed that July should be designated Sarcoma Awareness Month. An alliance of sarcoma doctors (sarctrials.org) supported us. We don’’t know any sarcoma nonprofit that opposes this effort. We have worked since 2007 to get a resolution introduced in Congress.

Nonprofit organizations and institutions that have supported this effort:

Beat Sarcoma beatsarcoma.org
Cure for Sarcoma http://www.cureforsarcoma.com/
Cynthia Solomon Holmes Foundation http://www.cynthiaholmesfoundation.com/
Dani’s Foundation www.danisfoundation.org
Desmoid Tumor Research Foundation dtrf.org
GIST Support International gistsupport.org
H. Lee Moffitt Cancer Center in Tampa moffitt.org
Kristen Ann Carr Fund www.sarcoma.com
Liddy Shriver Sarcoma Initiative www.sarcomahelp.org
The Life Raft Group liferaftgroup.org
LMSarcoma Direct Research http://www.lmsdr.org/
Jared Juggernaut http://jaredsjuggernaut.org/
Northwest Sarcoma Foundation nwsarcoma.org
Sarcoma Alliance http://sarcomaalliance.org/
Sarcoma Alliance for Research through Collaboration (SARC) www.sarctrials.org
Sarcoma Foundation of America www.curesarcoma.org

For more information, please contact the Sarcoma Alliance through former board member and long time patient advocate and volunteer Suzie Siegel at suziesiegel@tampabay.rr.com. Let’s work together!