Showing posts with label social media. Show all posts
Showing posts with label social media. Show all posts

Monday, October 16, 2017

Spam-A-Lot or Not?

I only have a few minutes before I have to be at my Texting Anonymous group meeting📵. It's not actually a physical meeting. You guessed it ... we text📱.

We text about why we have given up texting ... about the rejection that we feel
when no one texts back after we have shared an important part of ourselves, a piece of our lives (like a photo of the ice cream cone🍦 we are about to eat) ... about the isolation and depression☁️ we feel in a room of people, all with their heads down and fingers flying over their phone keyboards⌨️, who are obviously more important than we are because they have something interesting to text about and someone to text it to💔.


We text about why our outgoing texts📤 are considered "spam" while incoming texts📥 are considered texts😒. We text about why we must resist the urge to pick up that phone and pull up that way-too-tiny keyboard⌨️!

Spam ... what the heck is that, anyway? Well, I know what it used to be. It was processed meat(?) that came in a can and you fried it 🍳. It was a "getting from one paycheck to the next meal." Now, my sons tell me it means texts that haven't been requested. Hmmm ... now I must ask someone first if they want a text? But to ask them that would be considered spam, right? I'm just not getting the gist of this whole thing😕.

Years ago, before the internet 💻 and before smart phones📱 (and before most of you!), the highlight of the day was a visit from the mailman. Long distance phone calls ☎ were expensive so we waited with great excitement for the mail delivery 📭. Yes, he or she delivered ads and bills💸, and we called them "damned ads and bills💸." It never crossed our minds to say "our mailbox is just full of spam today" 😲... because that was probably what we were having for dinner.


But the mail also contained something exciting that you are probably not familiar with ... letters💌. Personal, hand-written (people used to do that, you know) letters that asked how you were and wanted to know what was going on in your life and filled you in on theirsℹ️. Sometimes, to make you feel really special and loved, photos📷 were included. I guess it just didn't dawn on us to respond with "I didn't request this letter or these pictures so stop spamming me." Then we would write back with our own news. That's how it worked. This was called communication, written correspondence, keeping in touch ... and I miss it☹️😭.

And when we were out somewhere, we didn't take our stationery (that's what we called the paper that we wrote our correspondence on)📜 and pen✏️ with us. We left that home and actually talked to other people ... yes, by looking them in the face👀. Novel idea, huh?  And if we were special, we received a hug. No, not an emoji but a genuine arms squeezing around you, crushing your ribs, taking your breath away hug. Sigh ... those were the good old days! And that was REAL communication!!

When I got texting on my phone, I thought how great it would be to send texts just because I was thinking of someone or to share everyday life😀👏. Now I can understand that my family👩‍👦‍👦 and friends may not be as interested in my tomato plants 🍅 or the resident squirrel as I am, but hey ... at age 70, that's about as exciting as my life gets👵!

I mistakenly thought texting would be a great tool🔧🔨 because I am a sharer. I like to share everything that happens daily in my little world🌎 (as you can tell from my blogs!) ... and that has turned out to not be such a good thing for a texting addict☹️. But I give my textees (the lucky recipients of my earth-shattering messages) choices. If they don't like the photos of my cute new shoes👡, then I'm sure they are interested that McDonald's 🍔 in New Hampshire serves lobster rolls . Who wouldn't be, right???


But now I have to remind myself, "Donna, step away from the phone.📣" I come from a different world ... and texting is not bringing me happiness. Well, the texting is delightful, but not when you can only text yourself for fear of bothering someone else. Then to add to the rejection, sometimes I don't even respond to myself! And that is why I need Texting Anonymous📵.

I am proud to say that I have not sent an unsolicited text for a few weeks now 📉, but the urge is still there😲. The road to recovery will be difficult, but I just need to remember the torture of staring at that blank screen waiting ⌛⏰⏳ for a reply, putting your life on hold while you assure yourself that your message must have gotten lost in space somewhere☹️. Because why else would the receiver not be excited that you found the best Greek yogurt flavor ever😋?!!

I would remove texting from my phone plan but then how would I be reminded of my next dentist appointment 📅 or that my prescription💊 is ready to be picked up. Besides, do they even have plans anymore that don't include texting?? Wonder what they would say if I asked them for the plan that includes spamming instead of texting???💭 Maybe I should text them and ask ...
 
 



Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)

http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
 

Friday, May 29, 2015

Birth of an Anti-Tanning Bed Grassroots Movement

Previously published on May 21, 2015, at http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/




Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.



My Jaime's story gave me the passion and conviction to become "the indoor tanning industry's worst nightmare." The day after Jaime's funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.

 

I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed ... but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime's story for both of these laws.



As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety ... but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.



It has been up and running for about 5 months, and now has almost
1,900 members [in 2021, close to 4,100]. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that "glow" for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.


There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons' Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising "self-harm," which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.



Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 [now 300+] colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. [Dr. Sherry Pagoto, who did the original research on this topic for the University of Massachusetts, is providing guidance.] We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.



Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!



Melanoma Mama (Jaime's mom, Donna)

Twitter: @melanoma_mama
Facebook: http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)

http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
Etsy: https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
Ebay: http://stores.ebay.com/Sweetpea321 (Jjem Creations)
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf

Tuesday, May 6, 2014

Promises Made Are Not Necessarily Promises Kept

Earlier this spring I wrote a blog about the positive impact of social media (http://melanoma-mama.blogspot.com/2014/03/social-media-black-ribbon.html). It was about the American Academy of Dermatology's (AAD) attempts to change the color for melanoma awareness from black to orange in 2013. The outpouring from an angry melanoma community through Facebook and Twitter made them rethink their "orange" party campaign. It was ugly, with dermatologists and their staffs caught in the middle (see photo).


This was being promoted by AAD in 2013
This past spring, as my blog described, a small group from the melanoma community was beckoned to a phone conference (more specifically, a one-way presentation by the AAD). We were told what we so desperately wanted to hear. The AAD made promises about encouraging black (which we take as seriously as the breast cancer community takes their pink!) and supporting our efforts to create awareness by retweeting and sharing our messages. We came away from that "meeting" feeling like we had been heard ... that social media had worked to help us save lives. With all of us working together, we could concentrate on creating awareness instead of creating drama.

After that, there were follow-up emails and phone conversations with our ideas and suggestions ... which as it turns out was a total waste of everyone's time. We were being played. It seems that we were being told just enough to keep us calm and not stir the waters.

And now for an update: Fast forward to May 5, 2014, Melanoma Monday. The melanoma community received the rude awakening that for the AAD, there is no "us." They did not follow through with their promises (yes, you can read that as they lied to us). It is obvious that they are typical big business and only care about the $$$. The melanoma community, on the other hand, is forced to deal with the pain, fear, and destruction of melanoma every hour of every day and wants to create awareness so others do not have to suffer. So we obviously have different agendas.

We complain about the indoor tanning industry and their deceptions, but it seems the AAD is learning from them. I am offended that the AAD is being so disrespectful and insensitive to the melanoma community. I am dumbfounded that they are sending me emails asking me to support THEIR efforts for Melanoma Awareness Month, which they call Skin Cancer Awareness Month, when they seem oblivious to our requests that BLACK be used for melanoma. Now don't get me wrong ... I have nothing against skin cancer or any other cancer, but Melanoma Monday isn't about any of those other cancers. And promoting black for that one day or for even a month shouldn't have taken any effort on their part.

All in all, I am just plain angry! I come from a generation when a person's word was everything. I don't understand or appreciate being lied to or manipulated. And I feel used. I wrote that blog that gave everyone hope for a great new-and-improved melanoma awareness day and month ... and now I am forced to write this one to say "never mind."

So maybe David can't slay Goliath but perhaps he (or me) can just ignore him and do his own thing!



Friday, March 7, 2014

Social Media & the Black Ribbon

Social media is an amazing tool, and I am in awe of its power. It can unite thousands who thought they were fighting a disease alone; it can bring about positive social change. I am delighted to report that social media has had an impact on those in the melanoma community ... and on anyone who has skin!

I was fortunate to be part of a group representing the melanoma community that participated in a teleconference with the American Academy of Dermatology (AAD) regarding their upcoming May Melanoma/Skin Cancer Awareness Month campaign. The AAD is an organization of over 17,000 US and international dermatologists, dealing with any and all skin conditions/diseases. Its support is valued by the melanoma community (melanoma is the type of skin cancer that can be deadly), although the melanoma community has proven that we can, if we must, stand alone. But we would rather stand together!

The Orange Crush Campaign


Many may remember that the AAD's May 2013 campaign caused quite a ruckus. I understand that their intent was to draw attention to skin cancer, but in the process, they managed to offend most of the melanoma community by attempting to change our awareness color from black to orange. And yes, the ribbon color is a BIG deal to those fighting a disease or disorder. It identifies and creates awareness (just look at the pink ribbon, if you don't believe me).

The dermatologists were encouraged not only to wear orange but to throw parties with orange cupcakes and orange confetti on Melanoma Monday ... because melanoma is so much fun??? It was painful and disrespectful to those fighting and to the families who have lost loved ones to this ugly disease. We were appalled that the same dermatologists who treated our disease, who watched our warriors suffer and die, were celebrating Melanoma Monday rather than honoring melanoma patients and remembering those who could not be saved.

But it goes further than that. One major problem with educating the public about melanoma is the idea that it is "just" skin cancer. Cut it out and go on with your life ... which is far from true. So it is certainly not helpful to have melanoma thrown in as just another skin cancer. It needs to be respected and feared ... and that is just not compatible with Popsicle orange. 

Are You Listening???


Through social media, the melanoma community fought back while at the same time trying to educate the public about melanoma. We explained that black is our awareness color because melanoma actually means "black tumor."  Yes, it is depressing and sad but so is melanoma ... and dark and evil. There is nothing cheerful, happy, or vibrant about melanoma. One person dies in the US every hour from this vile disease. 

Plus, to add to the pain, orange is the color of the sun ... a reminder to many melanoma warriors fighting for their lives of how they got started on their cancer journey.  Each new "orange" event introduced during the month of May was like a dagger in the heart of the melanoma community.
 
We were hurt; we were offended; we struck out through our tweets and Facebook posts. Yes, we were obnoxious and loud. I confess to making a few ... okay, a lot ... of smart-ass remarks myself on Twitter and Facebook during May to defend the melanoma community and our BLACK ribbon. 

David vs Goliath


Although we were small in numbers, we were heard, which brought about our teleconference with the AAD. We used social media and brought about change ... and it will be beneficial change for the melanoma community, as well as for those who want to avoid joining this type of cancer group (which should be everybody). 

This year the AAD will be supporting the melanoma community during May because we are now working together. Dermatologists will be asked to wear BLACK on Melanoma Monday, and melanoma will be the focus of the AAD's campaign not just for one day but for the whole first week of May. Their campaign will promote early detection of skin cancer ... instead of the color orange. 


There probably will be bumps along the way, but I think we are headed in a positive direction. And thanks to the power of social media, and to the AAD for being receptive, our voices were heard and lives will be saved. Over 7,200 supporters joined a group on Facebook to wear black for Melanoma Month last year, so we are not as weak in numbers as we thought. But joining with the AAD and their dermatologists will make us even stronger and able to save even more lives through early detection, information, prevention, and research. And it feels really good!

As a follow-up to this blog and to see how it all turned out in May 2014, see http://melanoma-mama.blogspot.com/2014/05/it-sounded-so-good-when-i-wrote-it.html

 Melanoma Mama (Jaime's mom, Donna)

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