Social Media Connects Carcinoid and Neuroendocrine Cancer Survivors

Denise Passehl, a carcinoid cancer survivor, will share her experience with social media when she participates in the 140 Characters Conference on April 23 in Des Moines, Iowa. The focus of the conference, designed by Jeff Pulver, is how “real time technology (Twitter, Facebook are two examples) is changing business, agriculture, media, education, sports, celebrity – everything.”

Carcinoid cancer survivor Denise Passehl will speak about "Social Media and Cancer:  How the Technology of Now Helped Save My Life" during the 140 Character Conference in Des Moines, Iowa.

Denise Passehl will speak about "Social Media and Cancer: How the Technology of Now Helped Save My Life" during the 140 Character Conference in Des Moines, Iowa.

The day begins at 9 am in The Stoner Studio Theatre.  Speakers present in segments of 10 to 20 minutes and their information is shared in a tweetable format.  The speakers will talk about topics relative to Iowa lives.  The conference provides an opportunity for the worldwide Twitter community to listen, connect, share, and engage.  Use the hashtag #140confLOCAL to follow the conference on April 23. Read more about the conference here.

Carcinoid cancer survivor Denise Passehl to speak at 140 Character Conference in Des Moines, Iowa

For Denise, social media offers an opportunity to connect with other patients living with carcinoid, a rare cancer of the neuroendocrine system.  She will be talking about how her “experience on social media has helped me to live with carcinoid” and how she counts on her friends on the carcinoid social media groups “for support and comfort when others do not understand what I am really going through.”  The title of her conference presentation is “Social Media and Cancer:  How the Technology of Now Helped Save My Life.”

In her blog, Denise Thinks Green, Denise describes herself as an entrepreneur/owner of a home-based business, wife, mother of one son, grandmother of twins, dog lover, and nature lover.  Her March 14, 2011 blog, Carcinoid Cancer: I Am Thankful for It, explains how the disease has  brought her “so much closer to God.”  Despite having a rare cancer, Denise finds much for which to be grateful, including family, friends, and her medical team.

“I am thankful because I have learned to enjoy life a lot more. I laugh, I play and I do what makes me happy. I love each day of my life, it is an adventure and I look forward to what God has in store for me every day. I see things in a different way, like a child sees things. I don’t take anything for granted anymore. Most of all I am thankful that I am alive. My heart is so full of gratitude. “

Denise’s experience with social media is featured in an article in The Des Moines Register, “Cancer Survivor: Twitter has been a lifesaver.” Follow Denise on Twitter, @LoveLivingGreenCarcinoid cancer survivor Denise Passehl on Twitter

There are many social media resources for carcinoid and neuroendocrine tumor (NET) survivors including a wide variety of Facebook pages, Twitter accounts, online support and discussion groups, and blogs. The following is a sample of social media resources focusing on these rare diseases:

Carcinoid and neuroendocrine cancer survivor stories and blogs, click here

Carcinoid Cancer Foundation on Facebook, click here

Carcinoid Cancer Foundation on Twitter, @CarcinoidNETs

Carcinoid Cancer Foundation on YouTube, click here

Carcinoid Cancer Foundation’s blog, click here

NET Cancer Day on Facebook, click here

NET Cancer Day on Twitter, @NETCancerDay

NET Cancer Day on YouTube, click here

ACOR (online support group for carcinoid survivors), click here

Lungnoids (online support group), click here

List of more online carcinoid and neuroendocrine cancer support and discussion groups, click here

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3 Responses to Social Media Connects Carcinoid and Neuroendocrine Cancer Survivors

  1. Lety Pineda says:

    Thanks for the information, I have been looking for this kind of media!!
    Lety Pineda (Mexico)

    Like

  2. Hi Lety, we’re delighted that you found what you were looking for! Are there support groups you can turn to in Mexico? Can we help you form support groups? Please write to us at carcinoid@carcinoid.org if we can help in any way!

    Like

  3. Hi, Lovable Lungnoids on Facebook is also available with nearly 500 members creating a family and network of support, information, and encouragement. :) <3

    Like

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