Thursday, September 11, 2014

1st Anniversary Chat- Advocacy for Yourself and Others

September is the one year anniversary of the #gyncsm chat. Before providing the information about this month's chat, Christina and I would like to thank:
  • Our health care moderators: Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry J. Markham and Dr. Ann Becker-Shutte for their support, participation and guidance.
  • Dr. Matthew Katz for helping us write our Tweet Disclaimer, for responding to those first "Wish we had a community for gyn cancer survivors like #bcsm" tweets, and for continued input and guidance.
  • The #bcsm community for allowing us to model your community and join in your conversations. 
  • The Society of Gynecologic Oncologists for supporting this chat and spreading the word about our online community. 
  • OCNA for welcoming us as a Partner Member and sharing our tweets.
  • The gynecologic cancer survivors who have participated in our chats for sharing your experiences and supporting others diagnosed with your disease.  
  • The health care providers, cancer researchers and organizations who join us from near and far. Your insight is invaluable and your interest in your patients physical and emotional well-being should be mimicked by providers and researchers and organizations everywhere.
Without all of you the #gyncsm community would not have grown from two women interested in advocating for gyn cancer survivors to a vibrant strong community.

In an effort to get your feedback and suggestions we ask you to fill out the #gyncsm survey which can be found at

This month's chat was about Advocating for Yourself and Others. We were joined by Globeathon (@globeathon) and ovarian cancer advocate Gwen Harding-Peets (@greenP11). We had 56 participants, 691 tweets in the hour and over 1.5M impressions.  The full transcript is available here.

The topics covered were:
T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

T2: What skills & tools do you need to be an effective advocate for yourself or your loved ones in the healthcare system? 

T3: What issues in the GYN cancer community do you think we need to draw attention to?

T4A: How can GYN cancer groups, especially #gyncsm & @globeathon, help you better advocate for yourself and others about GYN cancers?
T4B: What are the hurdles & barriers in in advocating for yourself and others & in raising GYN cancer awareness?

T5A: Pls share local/national/global patient advocacy groups you work w/ – include twitter name and/or website & location if you can 
T5B: Also share - How are you raising awareness about GYN cancers during this awareness month/year-round?

Next month's chat is on Recurrences and will be held on October 8, 2014 at 9pm EST.

We hope you can fill out our survey.


Starbryge Health Online

Google Alert for #ovariancancer

SHARE national helpline: 866-537-4273 @SHAREing

Support Connection

@OCNA Advocacy at Home, Advocate Leader program & Research Advocate program

Peach Outreach - great advocacy group for endometrial cancer

@OCRF Woman to Woman Program

Foundation for Women's Cancer - Information, Toolkits, Campaigns

Government Sites

#GotTeald someone today!

Volley - Notes to Researchers

@CancerAdvocay Legislative Advocacy Training Modules

Yahoo group: OvarianCancerSupportCommunity

Linda Young Ovarian Cancer Support Program
Joanie Triestman
I Have Lynch syndrome

Other Organizations:

Article links:
Study: Half 26-35yr women unable to identify vagina on a diagram
Dispelling the Myths About Palliative Care

See you next month!

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