Tuesday, May 24, 2016

The Giant Hug (aka Melanoma Patient Symposium)

As soon as my husband and I stepped foot off the plane from Dallas at Newark New Jersey Airport, I knew I was in trouble. My eyes began that now familiar feeling of a waterfall starting to cascade down over my cheeks.

This was the first time I had been to New Jersey in 10 years ... and the first I had ever been there without my best friend and precious daughter Jaime, who died at age 29 after a 9-year battle with melanoma. So many times I had walked through that terminal shadowing our princess and pulling our bags ... but not this time.

What had I gotten myself into when I agreed to speak at the AIM at Melanoma/Atlantic Health System patient symposium in Morristown? Why didn't
I think about it for longer than 2 seconds when Dr. Eric Whitman, Jaime's melanoma specialist for 5 years, asked me to tell Jaime's story and update the audience on the ongoing battle with the indoor tanning industry? Really ... what was I thinking???

Well, I did have a few moments of being a blubbering idiot, but then I felt Jaime's presence and the love that everyone there still had for her and I knew that I belonged there. It had been 10 years but Jaime had not been forgotten, and I realized that even though she couldn't speak herself, she was speaking through me (although I did censor some of her more favorite 4-letter words!).

So even though public speaking is not really my thing, I put on my big girl panties and did what I was asked to do ... what I needed to do ... and that was to spread awareness about the dangers of tanning bed use so that maybe ... just maybe ... someone would be spared from losing their Jaime. 

I entered into this as a rookie. I had not attended a patient symposium before and frankly thought they sounded stuffy, with a lot of technical/medical terms that I might recognize but certainly couldn't understand. After all, I had failed my college biochemistry course so it doesn't take much to put me into anxiety mode!

To my surprise, the doctors who presented (Dr. Whitman and Dr. Bickenbach) brought the information down to a layman's level, and I was totally fascinated with what I heard. As I mentioned, Dr. Whitman was Jaime's wonderful melanoma specialist and now Director of the Atlantic Melanoma Center and the Carol G. Simon Cancer Center at Morristown NJ Medical Center. Dr. Bickenbach is a surgical oncologist there and the new (really cute!) kid on the block. You need to remember his name because I'm pretty sure you will be hearing lots more about him in the future.

But my main take-home point (term I learned from the symposium!) was that the auditorium was just bursting with love and compassion and hope. My first thought was that it wasn't just a symposium ... it was a giant hug.

The doctors were both very approachable and made everyone feel comfortable and welcome. The patient panel told stories of their difficult roads to survival, and all showed such gratitude and admiration for the two amazing doctors who had helped them along the way.

I know, I know ... it all sounds so warm and fuzzy. Well, it was! And in the world of melanoma, warm and fuzzy just doesn't come along that often, so it was most welcome.

So as I reflect back over my trepidation upon our arrival in New Jersey, I realize that I needed that giant hug ... to be around people who understood what Jaime had gone through, people who had loved and cared for her so many years ago, people who wanted to hear the message about melanoma prevention by staying out of tanning beds.

Thank you, Dr. Whitman, for asking me (and Jaime) to be part of such a wonderful event ... and thank you, sweet Jaime, for being by my side the whole time.



See all videos from the symposium at https://www.youtube.com/playlist?list=PLOnM_erAQqID5av4kIzM1PkeCoNLYZfw1


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)

Wednesday, December 30, 2015

Colleges & Tanning ... Looking Back on 2015

2015 was the first year of Pull the Plug on Tanning Beds' existence. It was a busy year, starting with Tanning Bed Dangers Awareness Month in January and expanding to five different projects and a membership of over 2600. See these blogs (Road to Destruction ... for Tanning Beds and Birth of an Anti-Tanning Grassroots Movement) for info on how and why this group came to be.


It was also an educational year, concentrating our efforts on the connections between indoor tanning and colleges/universities. Too many colleges are making it much too convenient for their students to participate in the dangerous behavior of using tanning beds. Do they not care about the health and safety of their students? Or are college administrators unaware of the dangers of tanning beds? Or is this part of the plan to lure students and their money?

I think I learned more than I really wanted to know about colleges and their administration, about off-campus housing and their management, about people. I think I prefer being naive, but there's no going back now.

Emails were sent out to over 300 college presidents on the topic of their university's connection with indoor tanning ... actually they were sent twice because of lack of response. It became apparent that most presidents do not know whether their institutions have a connection with the tanning industry ... but in truth, almost all of them do.

We found that these connections might occur through the Dept of Housing, with partnerships/affiliations with off-campus housing offering tanning beds free to the students or working through third-party housing location companies that advertise off-campus facilities that include tanning beds among their amenities on the university's web sites.


Or indoor tanning connections might be seen through the Athletic Dept, with sponsorships by tanning salons or advertising at games or in event programs often arranged by third-party marketing companies. Some tanning salons claim to be the "official" tanning salon for the cheer teams of various colleges. The University of Louisville has a notorious connection with the tanning industry according to this article!

The Finance Office might provide a link to tanning by providing student cash cards that can be used to pay for tanning services at participating tanning salons. Grand Valley State University in Michigan claimed that they would continue to allow tanning salons to participate in their cash card program because it would be breaking the law to not do so. I never received a copy of that law from them even after asking several times.

The Student Government Association is another route that permits indoor tanning to connect with college students, raising funds by offering a student ID discount program and allowing local tanning salons to participate.

The student newspapers of many colleges are not supervised or regulated by the university so articles promoting the use of tanning beds or advertising by tanning salons can and do appear as well. That's an area we will be concentrating on next.

Most colleges, at least the larger ones, have some connections to tanning. Some even house tanning beds on their campuses, and it is becoming more common for them to be in their dorms! See this article about the direction student housing is headed. Colleges have become large businesses first, institutions of higher learning second ... or so it appears to me.


For example (just one of many), through conversations with various officials at Purdue University, I learned that the tanning salon located on their campus isn't technically (according to them) on their campus. That block of retail on the edge of their campus is owned by the Purdue Research Foundation, which I was told had no connection to Purdue University. Yet the President of Purdue is the Chairman of the Board of the research foundation ... which seems like a pretty strong connection to me! Check out this article that reported this info about Purdue.

At this point we have heard back from most of the colleges (after contacting them through multiple emails, Facebook posts and messages, and tweets). See our results in the Notes section of Pull the Plug's page in our Good, Bad, and Ugly list. But we are far from done with this issue! It appears that the FDA will be putting a ban on using tanning beds on those kids younger than 18, but that still leaves those young people 18-21 vulnerable. Their lives deserve to be protected, too! So on to 2016 ...


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)

Sunday, December 20, 2015

Dare to Dream

Last Friday was just a normal Friday ... or as normal as the Friday before Christmas could be ... until I received a notice from the FDA of a HUGE, earth-shattering announcement. They were proposing a ban against tanning bed use for all minors under 18 in the US! I had heard through the grapevine that this ban was coming, but I didn't know when. And I wasn't holding my breath because I'd been holding it for too many years already. Then suddenly, last Friday became AMAZING! The planets had aligned!!

It was almost 6 years ago that presentations were made at a FDA hearing on the issue of teens and tanning beds. One of my friends from the melanoma community gave this presentation that included Jaime's story. 


Her presentation was one of many that shared stories about how tanning beds had changed or destroyed young lives. The hearings seemed promising ... but then the waiting game began. If you know me, you know that I am not a patient person, so ...

In the meantime, my attention turned to state legislation when Texas introduced a bill to restrict children under 16 from using tanning beds. Even though it wasn't the under-18 bill that I was dreaming of (and many thought it was just a foolish pipe dream!), it was a step in the right direction. With help from Jaime's story, it passed, which was surprising for such a conservative state. (And eventually, a full under-18 tanning bed ban would pass as well!)

Others began to share my seemingly impossible dream of an under-18 ban in every state. I'm not sure I even really believed that it was possible ... but I was being pushed ahead by some energy and force that insisted I just keep going. (Thank you, Miss J!) Then along came AIM at Melanoma, working on an under 18 tan ban in California, and I was hooked! Although it was far from easy, it passed! Twelve other states would follow to pass under-18 tan ban laws, but for years many more tried and failed. I am proud, along with Jaime and many, many others, to have been part of most of these difficult battles, but my dream was that all 50 states would pass these laws to protect their children by keeping them out of tanning beds ... and there was a long way to go.

Then just as my energy was draining and my dream was dimming, last year the FDA renewed its focus on under-18 use of tanning beds. It announced a strong recommendation against the use of UV devices by all minors. Many of us thanked them, but also let them know that it just wasn't enough.

And that led to Friday's announcement. Now there will be a 90-day period to respond to their proposal, and assuming it will be adopted ... that will put it becoming official just about on the 9th anniversary of Jaime's death!

The stories of all the melanoma victims whose cancer was brought on by tanning bed use have been heard, including my Jaime's. The years of hard work by thousands of supporters for this teen tan ban are FINALLY bearing fruit. Many lives will be saved!! I am proud to have played a role in this, and my sincere thanks go out to everyone who contributed to making this happen, to those who dared to dream.



But wait ... we're not done yet with the indoor tanning industry! Visit and "like" our Facebook group Pull the Plug on Tanning Beds to keep updated regarding our continuing efforts. Now that we have seen the impossible become possible, there is no dream too big!!


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)

Thursday, July 16, 2015

Stepping Back into the Fog

It is past time for a blog from me. I can feel it as if the page is nudging me. No problem, I think. Most of my blogs tend to write themselves. But now I put my fingers on the keyboard and get nothing. They just don't move.

I recognize this fog of grief. I don't want to but I do ... and I know it will take a while for it to lift and allow me to focus. You see, my mom died last week. Yes, she was almost 96 years old; yes, she had no idea who I was for the past 2 years; yes, her quality of life was nonexistent. Yes, it was time for her to go ... but the loss still hurts.


This foggy feeling is all too familiar from when my 29-year-old daughter Jaime died 8 years ago (although it seems like yesterday). Jaime was young with her whole life ahead of her, she suffered courageously for 5 years with end-stage melanoma, and she was fully aware that she was dying. It's not the same ... and yet it is.

Because here we are again ... left behind with the intense emptiness, the conflicting memories, the messiness of dealing with death, the missing link from our family chain. Another piece of my life, my past, my youth has been ripped from my grasp (see my blog There Goes Another Little Piece of My Life).


I know I am not alone in these feelings. Many loved my mom and are affected by her death. Not only our close family and friends, but over almost a century she touched a lot of people. My heart aches for their loss as well as mine.

Matter of fact, I'm sure everyone reading this has experienced grief, and we all deal with it in different ways ... but we all must deal with it. It can't be avoided ... it can't be ignored. We grieve because we have loved.

Death is part of life, but as part of the melanoma community, I see death visiting our group way too often. I see their pain, I know their pain, I feel their pain ... but it is their pain. Now this is mine once again ... and I don't like it.
 
This treasured photo is from around 1979. Three generations: my mom, my daughter Jaime, and me! There were three of us then, but now I am the only one left. The two most important women in my life are now gone. It wasn't supposed to be like this ... it is not the way I planned it.
 
My life has been changed once again, and I don't like change. I am angry that I am once again forced to walk this path of mourning. I don't want to because I know what lies ahead on this long journey, but I also am aware that I have no choice. The good thing is that I know I can do it ... and so I will.

But right now, I am fragile, not broken, just fragile. My thoughts are scattered and don't want to leap onto a blog page. My fingers don't want to move, and my brain is resisting every effort to find the right words.

So I ask that you be patient as the fog clears because I have lots of future blogs to write ... I just have to find them ... and me ... again.

Rest in peace now, Mildred Jane Fox Helm (Sept 26, 1919 - July 7, 2015) ... Mother, Nama, Jane, Millie, or Blondie. You will be always be loved and missed by many! Thank you for giving us 95 years ... and forgive me for my selfishness in wishing there were more! I love you, Mom!!




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 [currently 2,050]. 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!




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

Sunday, April 19, 2015

Road to Destruction ... of Tanning Beds

It's no secret ... I've been waging a war against the indoor tanning industry for many years now, ever since my daughter Jaime died at age 29 from melanoma brought on by years of tanning bed use in high school and college. How did that war begin, you ask? Read on ...


It started out as a very bumpy, winding road. The week we buried Jaime,
I began writing letters to newspapers about the dangers of tanning beds and contacted my state legislators about introducing legislation that would restrict minors' use of these killers (but to no avail). I had the passion, I had the time, I had the story, and I had the anger.

Don't get me wrong. I was not looking for something to blame for Jaime's death. She would often say, "I did this to myself." And she did. Her melanoma (although not everyone's) could have been prevented if she hadn't had an obsession to turn her very pale skin into a shade more similar to cafe au lait. So I don't blame the tanning industry for this horrific hole in my heart ... but they are partly responsible by providing a harmful product.

When Jaime was using tanning beds, no one really knew how dangerous (and deadly) they were. The Center for Disease Control now says, "Tanning beds are one of the few industries whose product, if used as the manufacturer intends, puts the user at risk of harm." I won't get into the dangers of tanning bed use here because you can read about that in my other blogs, particularly Spring: The Teen Tanning Season.

Suddenly, the road took a different turn. Because I was so vocal on the risks of tanning beds (and this was when Facebook was just in its infancy), the American Academy of Dermatology asked me to make a Public Service Announcement video based on Jaime's story. This was when the Academy and I had a good working relationship, prior to their failed insensitive attempt to change melanoma's awareness ribbon from black to orange. Read Social Media and the Black Ribbon and Promises Made Are Not Necessarily Promises Kept for more on that story.

Following that, I was apparently targeted by the indoor tanning industry in a sting operation that failed, but I only learned of this recently: I Was A Paid Shill for the Tanning Industry. I was getting under their over-baked skin and had struck a nerve, it seems!

Jaime's story, along with that of many other tanning bed victims, has been used to pass under 18 teen tan ban bills in many states, including our home state of Texas (first for an under 16 ban and finally, with my testimony in both House and Senate committees, for an under 18 ban).  The only bad part is that because of all my correspondence with state senators and representatives across the country about tanning bed legislation, I am now on ALL of their newsletters ... thousands of newsletters!

You will often see my posts in the comments sections of online newspaper & magazine articles. I have been told by the opposition that Jaime never had skin cancer or that Jaime is just a figment of my overactive imagination. Really??? Do they think their lies and personal attacks will make me stop? No, they just motivate me even more!

Jaime's story of tanning bed use and melanoma has been told in newspapers, magazines, TV news, and online for over 15 years now. Actually, one newspaper did decide not to print our interview because the reporter thought Jaime's story was too well known (OLD news) ... that was just a seldom-read little tabloid called the New York Times! Others have also stepped forward to tell their stories of tanning bed use and abuse. I hope it is all making a difference. Whether it is or not, I'm not done trying!

Her story was one presented many years ago at hearings of an FDA panel for tighter restriction of tanning beds, and recently we have seen them act on those recommendations. With the US Surgeon General joining our cries against tanning beds, the road to destruction of tanning beds is getting smoother and straighter, soon to be a superhighway!

For years I have watched as the Facebook melanoma community found each other and then broke away into smaller, more specific groups -- for support, for sun safety, for melanoma, for skin cancer -- but nothing solely for indoor tanning. So last December I started the group Pull the Plug on Tanning Beds, which now has over 1,860 like-minds who want to create awareness about the pain and suffering that tanning beds create. The story of what I have discovered through Pull the Plug on Tanning Beds will be my next blog ... so stay tuned.

Many years ago I proclaimed myself to be the indoor tanning industry's worst nightmare, and I believe that I have lived up to that title. The bad news is that there is so much more work to be done, and the more I dig into this industry, the more dirt I find. The good news is, however, that I have found more friends who are also royal pains in the tanning industry's butt ... and together we are getting even LOUDER!!




Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Friday, January 23, 2015

Happy 1st Blogiversary to Me!

 My entry into the Blogisphere occurred 1 year ago today with the labor and delivery of my first blog! So Happy Blogiversary to me!


I want to thank each of you for taking the time to read each blog and sometimes leaving comments. It has been quite an adventure, and I'm glad you all traveled this journey with me. 

Some blogs were written with tears; others took on a life of their own. Some stories made the long trip back through memory lane; others were full of more information than you ever wanted to know about melanoma and tanning. I have shared stories that, until that blog, had been held close to my heart and never shared before. You have also seen my sometimes quirky sense of humor and my usual snarky sarcasm. I've earned search key words that I can't print here because they are pornographic in nature; I have gathered readers from all over the world, especially South Africa.

There are many more blogs waiting to be told, but for now, every ounce of my time and energy is being squeezed into getting my newest Facebook page, Pull the Plug on Tanning Beds, up and running. I realized a void in the Facebook groups. There are groups for skin cancer or melanoma in general, for support, for sun safety, for remembrance, for advocacy, for combinations of all aspects of melanoma ... but nothing specifically and solely addressing the dangers of tanning beds. 

So Pull the Plug was born, and January, the beginning of the teen indoor tanning season, was designated as Tanning Bed Dangers Awareness Month. My goal was to blanket the social media with information about the risks of using these death beds ... and I think, thanks to its more than 1,300 members and growing, we have accomplished that goal and more. 

Along with spreading awareness, we have been contacting colleges and universities about tanning beds on and off their campuses and about making risky behavior more convenient to their students by including tanning salons in their cash card programs. We have battled with tanning salons and their false advertising on Facebook. We are contacting fitness centers about including free cancer with their membership by having tanning beds. And much, much more.

All this will continue beyond January ... actually, until either I or tanning beds are obsolete! So if you haven't joined us yet on Pull the Plug and you care about the damage being done by these cancer machines, please consider this your invite.

But back to the celebration for now! One year of blogs behind me and a new blank page just waiting to be filled. I hope you enjoyed reading my blogs and took something good away ... more information, a different point of view, a smile, an understanding ... and I hope you will continue to follow me. Thank you again!

 


 Melanoma Mama (Jaime's mom, Donna)



http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)