When I posted the last blog, I titled Jane Akre & Periscope, I had no idea that so many groups were already up in arms about the new Non-profit ‘Mesh Victims United’. So, it really took me by surprise.
Within a few hours, I received 2 private messages through my mesh Angels FB page, from a woman I spoke to, but did not identify on that blog. However, it seems many people already knew who she was and were already up in arms, because their group had been posted on this site without permission. They were also angry because Jane Akre is on the board of this recently new non-profit site.
So first I must answer these comments/questions publicly. Please note, I did not edit anyone’s writing. Here is the first one from the woman I have not identified.
“There must be a reason no one can post on your site and the information you posted is untrue, you don’t know the facts and really should not spread rumors, how disheartening for so many.”
To begin with, I did not spread any rumors. What I did do was post a blog and gave what I could find about Periscope Group and my opinion about their website, based upon what I saw. I also made sure I gave the write-ups I read on this site, which led me to believe what this company was about. I will clarify more about these sites, after I answer these messages and comments. I will also explain why I felt compelled to write this blog, even though I prefer not to write blogs continuously anymore. Let me clarify once again, that ANYONE can leave a comment on this blog, but it is up to me, if I approve it or not.
“We disagree with quite a few of your (facts). Much of it appears to be an opinion. Let’s just start with I clarification. You have made a statement that Periscope has paid for our 501 c 3, since that is untrue, we would like to know what fact you are basing this on?”
You are right, I only know facts that are visible on your site, and this is why I believe Periscope paid you for this site, or at least part of it. If you reread what I wrote, you will find this, on that blog.
“Since then, I have been told that Periscope Group paid for the 501c-3 non-profit status with a donation. First, I already explained how I found the Periscope group is on your site as a ‘contributor’. Let me clarify again.
I did not just assume they had donated, I went to various pages of your site and read this, which I have copied and pasted for you to read.
“Contributions to MVU will be tax deductible to anyone who donated in 2018, according to IRS Certification of Incorporation.”
You stated this. ‘ Contributions ‘ to MVU will be tax deductible to anyone who donated in 2018, according to IRS Certification of Incorporation.
I was once a tax preparer, so I understand how this works. However, I also know many, many women do not pay income tax because of their low income, because they cannot work due to their injuries. Plus, there is an amount you must earn, to claim this tax deduction, even if you do earn enough to pay income tax. But setting that aside it was the word ‘contributions’ that I took note of because it is the same word you use for Periscope Group.
The only ‘contributor’ I found was Periscope group and no one else. As a public non-profit, it would be wise for you to post the check/amount that Periscope paid to your non-profit, if you wish to clear this up.
There was another short comment left on this page, that I did not approve, because once again I wish to clarify and answer on this blog. I am doing this, because this comment made little sense and it reads like this woman may be part of Periscope, but I honestly don’t know her, so she could be a mesh injured woman.
The person commenting is Sage Jones;
“The push is it’s a really good book and it tells the story that too ne else had the courage to tell – the entire story- dr, lawyers, device companies. Everyone just wants to help women affiliated with any mesh group- and help. Jennifer has offered to send the book free.. and it’s good and im sure shell send it to you too but you should read it before you judge .”
Okay, first I did not understand what the push meant, but I believe she is referring to the book Crystal Mesh. What did I write about the book on the last blog was this.
“This Periscope group is pushing videos and a book called Crystal Mesh, which I am sure a lot of women may have already seen someone pushing for book sales. However, who is collecting the money and what is it being used for? Two questions that need answering with the truth, not some lackluster explanation. I have not seen this book, but of course women do inform me about things that upset them.
This is one thing that had them very upset.”
“Jane Akre is thanked in the acknowledgments”
Please read the words again… I did not judge the book content, because I did not read it. However, I am stating now, that I will not be accepting the offer for a free book, because I do not take anything for free, because of what I do here. I am accountable to my own conscience and all the injured women I know.
If Jennifer Banmiller or Alicia Mundy wish to read MANY other women’s stories, including mine, they can do so here on this blog. Believe me it will shed light on all the years we have suffered and what we have all gone through and continue to go through. However, I am sure they did not and probably won’t read any of this blog. My guess is, they heard about me and they judged who I am, based on rumors from other people, not by reading this blog.
Now to tackle one of the longer comments from Jennifer Banmiller and you will see why I chose to answer in this blog. Here is the long comment from Banmiller.
This is Jennifer Banmiller from Wingtip and Periscope Group as well as co author of the book Crystal Mesh.
When i stared my own business 25 years ago in the law firm consumer space, i was the only women in this business. Through the years , we have seen every recall since fen-phen. Being involved in Mesh on the legal side from the beginning is why i have been so passionate about this subject. I had seen a lot of really bad injuries from drugs and products but never on the scalability of Mesh. Government, lobbyist, dr and Medical device companies didnt want to help the women and when lawyers would call or wed be at meetings where id hear such disregard for the women and how they were moving on from this litigation, i thought what can we do to help. No one knows the entire story. So i had contacted alicia Mundy who had written the fro then debacles 25 years before and told her about Mesh. She couldn’t believe that this could have happened either so we decided to write an expose on the mesh scandal.”
Jennifer, first I wish to thank you for clarifying that you are involved with both Periscope Group and Wingtip Communications. I had already done a lot of research on you and I will tell you honestly, that I do this, because I always like to ’see’ the person I am writing about, so I found your photos. Once I had more information about you (I found it all myself) I wanted to learn more, so I kept searching.
I can assure you I am not going to post here what I found, but I know your background and so much more. I also found your partner of one year eight months with the Periscope group, because I found the connection and read his bio. I am not going to post who he is either, because his bio shows he is no longer with you, but with a different company and it has nothing to do with this blog. Enough said about that, but this is to let you know, I am a through researcher.
“The goal was to get more attention to the cause and help build treatment centers and get doctors on board who could help women because most every women we spoke to dont have resources or medical help.”
Yes, I did read your entire comment and what struck me about this is, did you have a mesh implant?
Was yours removed?
Do you understand all the different type of complications and every type of sling that was manufactured and the new types just coming on the market?
Do you know doctors who can and WILL fix injured women, WITHOUT using mesh and the name for each type of surgery?
The truth is, I do because not only am I seriously injured by an implant, but also by a drug. I have had five major surgeries and my situation is so compromised, I will not have any more, due to the fact that each surgery proved more dangerous for me.
I should tell you the first surgery was done in Houston and the same surgeon cut the sling nine weeks later, only after she realized I could never urinate on my own. Even then, my bladder was so badly damaged, I had to self-cath. That was not the last time either.
If you have gone through any of this personally, please enlighten me.
If the answer is no you did not have an implant, how can you understand? You can’t and neither can Jane Akre, because she hasn’t had any implant, either.
“Im happy to send anyone who emails me a free book and you can see for your self what he book says and it tells a really true story of everything mesh including the lawyers ross since i saw it front view.”
I have already declined the offer of a free book, because I do not take anything free because this would compromise my integrity.
“I chose to write he book not to make money , as we all know what books costs to write and how hard the yare to sell but to let women know it wasn’t in there head, it happened exactly as they say it happened and the women need help.
Our last chapter redemption is very constructive on what we do to help mesh women because no-one is helping them it seems.”
You obviously have never read this blog, because I have been helping women for nine years, by listening to them, doing research to help they try to continue to live. However, I concluded a long time ago, that there is not enough money, to help them.
This is what they really need. Enough money to buy medical insurance and paid travel, to go to a doctor who truly does the best they can, with the mesh we are in, when no one else will do it. Yes, and most doctors will not do the correct tests, to find mesh, because most only do revision, which is the Bull…. Name for cutting the sling or trimming off eroded mesh in the bladder. That is only a temporary fix.
“So yes we wrote a book and we are proud of it. We hope women all over the world know there voices have been heard .”
Once again you obviously did not read this blog, or read my Facebook page, because women are all over the world and I do all I can, to help them too.
“No we didnt pay for any 501c , nor have we paid for any 501c,but if women groups come to us an ask for help paying for a retreat or a wheelchairs for a march or conference, if we can help we do because we are all in this live together and as jimmy buffet said, The World is what you make it.” We are alway open to helping with functions that we know women cant afford necessarily on there own and the extras that go with it- vans wheel chairs, etc. So please dont shame us because we helped with a retreat or a chicago march which women felt would make a difference . If you’d group or any group would have reached out to us, we most likely would have also helped but we didnt know so how could we have helped. “
I did not write anything at all about Chicago, so I wish to clarify that. I would also like to ask you how much you did donate to Mesh Victims United? After all a non-profit must disclose this one day anyway and you could clear things up if you do, and post a copy of the check.
We also give tons of money to animal causes and anything else we think or feel is important and we think Mesh is important.
My daughter and I do have a dog rescue, which we rarely get donations for, but we do this for love, not money. I personal cannot walk, bathe or do any lifting, but I love them and make our own food, not buy it. We also support dog shelters, s you can see, I am a very caring person.
“Wingtip and Periscope group have been in place before Mesh and thats why the story hit us so hard. We had never seen such carnage. We spoke to hundreds of thousands of women and this ws our small way of helping were we can.
As far as any money that would be made, it wil be going into a fund to help women who cant get care get some and we hope that this books actually helps to get the lawyers collecting the 500m pay day im MDL, doctors and Medical device makers to also put money or donate to a type of treatment center like Australia has done because it can be done.”
Glad you mentioned lawyers. Here is my issue with both sites. I have viewed both with an open mind, but I was struck by several things. On both sites there is no photos of you, nor any mention that you are the CEO. This was strange and highly suspicious to me for this reason.
I have been to many, many lawyer sites, especially tort lawyer sites. I have noted that good tort lawyers have photos of every lawyer, including email addresses. They have good blogs, with decent information. Yes, they tout their winnings for a few people and NO I don’t agree with that. But they are transparent in what they do.
Now here is what is missing on your sites.
No list and photos of all the lawyers that you will be handing injured clients over too.
No statement about what you will collect for your service. Yes, transparency…
What you do have is all stock photos throughout your sites. Wingtip has photos that look like it is a call center. I see men’s hands shaking as if a deal was made. Believe me, I have learned so much, because anyone can hide behind a screen on the Internet. Anyone can look like they are something much larger than they are.
You began your comment with ‘Hello Ladies’. This struck me as funny, because at one time there were a few ladies, who did help me call other women, because I was so overwhelmed by the sadness of doing it all on my own. For me it was a 24 hour a day unpaid job, while I too was suffering. However, once I gave facts and evidence in blogs (you can read these for yourself) about who Jane Akre was/is, they upped and ran. So, I am totally alone and have been for a few years, but I still work hard, without pay, because I care what happens to women. I don’t know anyone else who has worked as long and as hard as I have, even with my many disabilities.
“id love for you all to read the book, free of charge , before you judge what was in our hearts when we wrote it.” I did not judge the book, because I have not read it as I have already stated, and I decline the offer.
“Alicia Mundy im sure will respond to as she spent hundreds of hours speaking to dr, women , sales reps for ease book. And she did thank Jane for help but i cant speak to what they spoke about but she was just trying to get he facts ,
The only truth here is that im a women owned business who took our resources to try and help other women.
As far as the lawyers go. We only work with a hand full of the ones that are actually workin these cases and they are mostly quoted in the books if owe call us , we;; try to hep as much as we can and if they want or need a lawyer because of there situation, we try to help as much as the can but the women make the ultimate decision on who they hire and who they have hired .”
Once again, please clarify on both sites, who these lawyers are and add their photos and credentials. This is so important because far too many women wound up with horrible lawyers, who only wanted to take the money and run.
I cannot share the things they told me, due to my promise that I would not. But you should learn what I have learned, and you will understand there are many bad, uncaring lawyers and some you turn over these cases, may already be on my radars. You would be wise to learn what goes on, if you want to help, not hurt, the people who trust you.
“We dont like what this system has become any more than anyone else but we are just trying to find a way to help and be a small part of the solution vs just the problem.
Please feel free to sen me an email if you’d like a book free of charge . But unless we al work together for change, for mesh to stop being put in any more women, and to support each other, what these dr, device companies and in some cases lawyers have gotten away with wont be stopped and women wont get help. So lets stand together, not apart on this.”
I used to believe in fairy tales, where women all over the world would help each other. However, Jane Akre burst my lovely, fantasy, vision bubble. You can blame her for all my life lessons to do with what NOT to do after you sign up with a lawsuit. Mainly, I learned to be observant and distrust anyone who says they want to help women, but do not have full disclosure on their sites.
“WE should all be working together to get a part that 500m in leadership fees to help with treatment and for J/J, Bard, BS , AMS as well as doctors to help mesh women not fight among ourselves.
So many women have tried to work help in there own way and whatever that is , i think we should really support each other if our goal is to actually help women which we plan on doing, even with these types of commentaries. Please read the book. We think you’ll understand the progression then.”
I believe I have already earned my degree in understanding the progression.
If you truly want to help women, help each one who wants to get their mesh removed, but do not have the money. THAT will be a worthwhile cause for you to do fundraising.
Thank you for your comment.
Now I need to post this blog because it is already too long. I will answer Alicia Mundy’s comment in the next one and finish clarifying my position.