June 5, 2021 Meeting: Survey Results and General Discussion

Peripheral Neuropathy Support Group

Watch there entire Zoom meeting here.                    

Purpose of Meeting: 

The purpose of this meeting is two-fold: 

1) to present and discuss the initial findings of the recent Member Survey

2) To provide opportunity for open discussion on participants’ topics of interest

Agenda:

1)  Welcome to all and acknowledgement of new participants (opportunity to introduce themselves after Member Survey discussion (2:00-2:10 – Pat)

2)  Presentation and discussion of initial Survey Findings (2:10- 2:40 – Pat and Jud) We went over the survey results first, and then into our open discussion.  I’m going to give some context of the member survey. We did a member survey back in 2017, but the focus was on your  problems specifically what you were facing, who you were having treatment from, what kind of results you were having. This is an entirely different member survey designed by the core group to get a feel for where we are, how well we’re reaching our members, changes that we might make to make it more accessible and relevant to what you’re looking for, the kinds of questions that you want answers for. Everyone on our mailing list got at least two invitations to take the survey.

Membership Survey
We were a little disappointed that out of 348 messages sent out we only had 25 who took the 10 minutes to take the survey and submit it. The survey will still be on the website, you can still submit your answers and they are automatically added to the analysis. We need your input to make decisions based on what the group needs. We have to know what you’re thinking, what you’re finding useful, and if you have a major idea like Terry Orlando who suggested the resource directory at her first meeting. What a great idea sharing of who is providing treatment in the area, who is using which medications and the results, what kind of services or products like assistive driving devices, all of that is of use to us in deciding how to spend our time and effort.

We began by showing screenshots of the questions that we asked. We talked about the results that we found and asked for comments or opinions. The first question was basic, how often do you participate in our monthly meeting, and we learned that 37% said that they attend regularly, and another 45% attend occasionally.

Sharon commented on the survey, I did get an email about it but when I went to enter any information, it asked me to log in so it acted like I had to have a Google account or something so I gave up and that may have happened to other people.

Pat:  That’s why we did this now is so we could get that kind of information. That happened to me once, and I went back, and the next time I clicked on the exact same link, it went immediately to the survey and I was able to fill it out. So we need to figure out what went wrong there and I apologize because we do want people to be able to access it.

The second question was that we currently meet every month and we try to have two speakers or presentations in a row. Then the third meeting is dedicated to open discussion. We asked people if they liked that mix, or if they prefer just speakers or prefer just open discussion, and the majority, by far, 83%, like the mix. We will probably continue with this notion of two speakers, and then followed by a open discussion meeting like today’s. Meeting duration question had to do with meeting on the third Saturday of the month from 2PM to 4PM, and 64% thought it was just right so we will continue that way. 20% thought it was a bit too long. Several people commented that they felt that it depended on the speaker so they wanted sometimes to use the whole two hours if the speaker was interesting or was imparting valuable information.  We will continue as we have been doing.

Steve:The group’s been meeting Saturday since I joined the group in 2008 and before that for 10 years. It has a lot to do with not being able to get access to speakers during the week and also attendees who were still working. When I was working full time, an evening meeting was really a killer so Saturday, I think makes some sense.

Pat: The next question was about Zoom, as we’re returning more to a degree of normalcy. Many people have indicated to us that they are happy with Zoom, that it is less effort. You don’t have to pack up your equipment and drive somewhere. We also have probably lost our connection at least with the Government Center in Annandale, and plus we have many more people joining us from other areas.

We now have a series of slides about our website, I want to give a huge shout out to Mike Foxworth and Jeb for the tremendous number of hours that they spend, tweaking this to make it more user friendly with the most current information We sincerely appreciate that effort. However, when we asked if the respondents had ever read or used it happily 52% said yes, but sadly 48% said no, they have never even read the website or gone to it for information or even just to find out what was on it. We need to get more people using the website because it’s a tremendous effort and an expense that we need to decide if we’re going to continue.

Next question is about the usefulness of the website, whether it’s relevant, whether it’s the kind of information that you’re looking for, is there anything that you see that would improve it and make it easier to use. We need your input as the ones who are using the website. We’re looking at other foundations and nonprofits websites to see if there’s a better way to present the information, and for the most part our respondents thought that it was useful and helpful and have used parts of it like the resource directory, some had read footnotes, but basically we still are split in 50/50 on who has been and who hasn’t been. We’re certainly encouraging you to use it and if you see a need for improvement, please let us know.

Next is the donate button and the join page is simply a button on a clickable link that says the word join. We’ve asked people to officially join because when you fill out your email and your address it gives us a little bit of a feel for who are our members, where they live, how can we contact them, and if you don’t join officially, you can’t get the invites, because that’s the basis for our MailChimp invitations to the Zoom meeting. Please go to the website, DCPNsupport.org, click on the join button and officially join. We certainly would appreciate it because as you can see here, more than half have not joined. So, if we can correct that that would be incredibly useful.

You can make an online donation to the group using the donate button. Many of us would prefer to just mail a check made out to DCPN Support Group to Rebecca Hotop, 10639 Canterberrry Rd. Fairfax, VA 22039. Rebecca is our wonderful volunteer taking care of our finances.  We used to pass the hat at the Annandale meetings and people would put in $2, $5 for the expenses of that meeting. Our expenses have grown as we have to pay for MailChimp, closed captioning, the website. We have a cushion and that primarily has been donated by less than 10 people who a contribution of $100 once and that’s carrying us, but the majority of our people who come regularly have not made a donation. We do have monthly expenses that have to be met. So if you have the inclination and the resources please donate. We asked about dues versus donations, do you prefer having annual dues paying at once and not having to worry about it, or would you prefer more the NPR model where if you’re able to contribute you become a monthly sustaining member.  It was pretty evenly split, about half of the respondents again, this was 22 people who answered, felt that donations were working, and we should just keep it like that. The other half said maybe we needed to do annual dues because it represented a commitment by the individual to the group sustenance, or it also was an indication that our expenses were likely to be covered. No one will be excluded from the group because of an unwillingness or inability to make a donation or pay an annual due. It’s just a way to make sure we have some consistent funding.

These are not currently tax deductible donations. We are working towards getting 501(c)(3) nonprofit status, which will allow us to advertise your contributions as deductible, but currently we are not formally a nonprofit so contributions from the heart. It takes time to get that 501(c)(3) exemption, there’s a lot of paperwork involved. It’s not impossible but you need some people at least one or two people, really focusing on it and understanding how the system work. We can’t apply for grants at this point until we have that 501(c)(3) status, and the same goes with donors. We hope to work with other foundations, and we may be seeking donors at some point, especially as we move forward to try and reach more people, if we’re in Pennsylvania and we’re in Richmond and we’re in Harrisonburg, we could be in New Zealand and we have people come from England, John and Pauline who have been at CJs meetings in the past. They came once or twice, as we are reaching out it will be more than the DC group and we may need more funding, but this is all going to take effort and time and we’ll talk a little bit more about that when we get to the volunteer section.

Bruce: I’ve been involved in establishing a 501(c)(3), but I had as my partner, a very good lawyer who knew something about it. It took us about six months or nine months, and he did it on his spare time. It wasn’t that hard to establish, but then every year somebody who’s in charge has to file the IRS paperwork that shows that you deserve to continue being a 501(c)(3) with a lot of advantages. Somebody is going to take on more work with this.

Pat: We’ll have more discussion when we get to the volunteer question because that frankly is one of our biggest concerns and issues of taking on more work with not getting additional volunteers, it’s really on the backs of about 12 people who are on our executive team who are doing the work at this point. 

Bill: Why don’t the ones who will help out, say that they will match up to $600 of fees, coming in or something like that.

Pat: Is this the day that we take the vote on dues versus donations or should we simply let it be as it is with the donations, having discussed how you can do it, I think part of the lack of donations is people weren’t really sure who to mail the check to, who to make it payable to or how to use the online donate button so I hope that today’s discussion at least motivates us to go ahead and make those donations. At this point, we’re covering our expenses, and if we get more people participating in the funding, besides the few that we’ve had so far, I think we might be okay.

Bruce: I don’t think we should do it today.  Others may come back to you with ideas, but remember the foundation, which is so important charges $30 a year and is key to getting all the new information. We should get a receipt from the treasurer that proves that you received it or shall we look at our checking account to see if the check has been cashed. 

Rebecca: You would have your canceled check. 

Jud : CheddarUp, you’ve got a good paper trail because that’s on your credit card, and then through an email receipt.

Pat: The next set of slides is all about our communication tools and how we reach our members. This is so important so your input would be appreciated. The first one we’re going to talk about is something called Footnotes, which is our electronic bulletin board, it’s sort of a monthly newsletter, like you used to get in print but now it’s on our website. We asked have you ever read it, and did you find it useful 45% said yes they had, and again 54% said they had never read it. We ask does it highlight the right amount of information, and the right kind of content. Footnotes was meant to give you up to date, the most current information on upcoming webinars research studies that Bruce had found for us and information that you should read each month to keep abreast of things that were changing like the successful Department of Defense push. Again, only 44% answered it with most saying no opinion. So it makes me wonder if the time and effort put into Footnotes needs to be changed to address something else. The second electronic resource is the resource directory. This was the idea that Terry Orlando had when she first joined to share information on treatment providers, and then we expanded it on services and products, and medications and supplements.

The first question asked, Do you know how to find the resource directory and access it because it did require a password. Although 40% said yes 60% said they either didn’t know how to find it, or get it to work. The password was for privacy issues and because we were publishing your email, and we were concerned that some people might not want to put in information, if they had to put their email. We did ask also have you ever taken the time to enter any information, have you ever put in your neurologists name have you ever put in the assisted driving school that you went to.

What we found is the majority 70% had never entered any information at all, and those who had entered have pretty much done providers, followed by products, and then medications. So we need to discuss about why people aren’t using it. If the passwords are the problem and we remove it are you likely to refer to it. Have you ever gone to the resource directory to find a podiatrist. Only 36% had ever looked at the resource directory to find out about a medication, or a provider. If people aren’t using them, is there a better way to present this information. We are gonna make it a clickable link so it’s easier, and eliminate that password . We’re hoping that if we remove the password people will enter their information . I don’t know how to make it any easier to share the information. If you have an idea we would love to hear it so please write to DCPNgroup@gmail.com. If anybody here has never gone to the resource directory, why not? Is it time consuming. Is it too complicated. 

Steve. The longer you have PN the more you’re accepting your situation and you’ve gotten your doctor and medication, but for newer people I think it would be invaluable to have a resource like this to be able to say you know this is a whole new game to me and what’s possible who’s good. What should I take,  what should I do. I would just keep doing it and keep talking about it and keep making it available.

Pat: The third electronic resource that we’ve been trying is the Facebook page called On Your Feet. 40% of the people responding said that they don’t use Facebook, 24% weren’t familiar with it. It is pretty much a conversation among just four or five people who have posted and answered each other, we need to use that more to share information, if you’re comfortable with Facebook, it along with Michael Wright’s Success Stories, is a really valuable resource for finding information and asking questions and finding answers. Michael tries to focus on the positive and that’s why he named it success stories. He has 15,000 followers, and we have 20, so what is Michael Wright doing differently for you to go to his and not go to ours. We just want to tweak it and make it helpful to you s if you have any ideas, please let us know. 

Then the whole question of social media. Where do people go for information online. I think we all got used to online because of COVID. We asked this question to see if maybe we were missing part of our audience by not being on certain apps or platforms or websites, and you can see the largest percentage will go to the Foundation for Peripheral Neuropathy, followed by Michael Wrights group, and CJs is the third group. It doesn’t seem that most of our group is using Twitter or Instagram or YouTube, though many of the recordings have been put on YouTube, and could be useful to us. I tried to advertise Michael Wright’s , CJs, Bev’s and of course the Foundation’s webinars, and make it as easy as possible by including a clickable link so you can just go from our site directly and register, you don’t even have to go back to FPN or Michael Wright.

Steve. I forwarded CJ’s helpful email with some links to various resources to my own Gmail list of not quite 348 . If I see anything like that I think is broadly of interest to the group I send it out.

Pat: This info is also in every footnotes, CJ’s summary will be at the lead of the next issue of footnotes, so if you don’t get Steve’s Gmail, go to the website. 

Happy Hour was designed to be a social interaction among our group members. Someone suggested that it would be nice to meet and talk about things other than peripheral neuropathy and get to know each other better. For the next six months every third Thursday will be Happy Hour starting at seven o’clock, with the next one on June 17. This is not to say that a group of you can’t have your own Zoom account and have your own happy hour, it doesn’t have to have the official sanction of this group or the MailChimp invitation to 348 people. If you see a regular turnout, and you want to start your own social Happy Hour whatever you want to call it, please feel free. 

Volunteering is our biggest issue that remains unresolved of the 25 respondents: 20% said yes, they’d be willing to volunteer, another 20% said maybe that’s encouraging that’s 40% but fully 60% said a flat out no, they could not, would not volunteer. It’s a little frustrating when you have a group of people who are enjoying the benefits and are not able to say that they can help it. It doesn’t mean that you have to commit for life or even six months. Rebecca took on being responsible for handling the Treasury, Terry and Dave have stepped up to coordinate the Happy Hour.  Steve, Joe and Justin are doing a fantastic job on finding speakers for us. Most of it can be done at home with phone calls and such. We’re all facing the issues of peripheral neuropathy and the constraints that puts on us, but if we’re going to keep our group going, we really do need some other help, especially if you have any technical ability, helping Judd and Mike with maintaining the resources . The volunteer positions are available on the website. 

Steve: I remember one session when we met in person and Mike Foxworth had prepared a little needs list as Mary Jo was just suggesting. We got 20 people filling out the form, checking off what they were interested in and we followed up with some of them. Maybe we need to do something like that to get people because it’s hard to do without meeting in person. Maybe send out a separate email just with volunteer assignments listed that we’ve never gotten volunteers for:  membership coordinator,  website, technical, and just see who responds, maybe you’ll get a couple of people responding to each of those categories if it’s written down.

Pat : This sort of begs the question because right now we have three or four people in that maybe category that need to be called and need to be asked specifically if they indicated yes or no or yes or maybe we need to follow up, but basically we have essentially four people, doing all the calling, all the writing, all of the tech aided by the eight people that are doing the ongoing stuff like the speakers and presentations and Treasury and drafting the minutes, but it’s basically on the back of those 12 people

Steve: That’s a lot better than it was two years ago when it was on two people, Mike Foxworth and me, and then Jud joined. We’ve made a lot of progress, we shouldn’t be so negative about it. I carried this for seven or eight years on my own back. I put out a lot of money and I never even put in for any reimbursement. We’ve made a lot of progress and we should build on it

Pat:  We are going to conclude the survey results so that we do have time for the open discussion, and the listing of the wrap up information. Think about donating. Think about volunteering, those are our biggest needs right now. We’re going to continue to meet by zoom for the next few months and we’ll revisit that as people get more comfortable meeting in person.

Diane: I want to thank you for all the work those of you on the team are doing. It’s a great group since I can’t go in person that I can really benefit from. I learned a lot from you and I really thank you all for everything you are doing as volunteers and your hard work.

Bruce M: I couldn’t commit to volunteer regularly for a whole year to actually do something every month but you can still help like I recruited a speaker on cognitive behavior and I’ve donated money. I stay abreast of the research studies and share it with the group.

Rodney: You’re always the first to make good comments on my draft minutes.

Pat: That’s a monumental effort Rodney and you might ask, why do we need records of the meetings. Well, just like Bruce alluded to the January meeting sometimes people say, who was that podiatrist who talked about reflexology, where’s that acupuncturist listed. If you can’t find it quickly on the website you can always go back to past meetings and that will tell you who spoke when and how you can contact them.  I’m going to end the discussion on the survey, and open it up to topics of interest.

3) Acknowledgement of donations and report of treasurer on current funding status (2:40-2:45- Rebecca) Currently we’ve got $1361.51 in the treasury. I received one check this last month for $30. I paid out $120 to Mike Foxworth for four months worth of the Otter link. Now as far as debating  an annual fee or dues, if we have 20 people willing to pay 20 to $30 a month that’s only 400 to $600, just the Otter link alone is going to cost us $360 a year. I like to ask people to send some donations either by check to me or through the website link. But if you write a check to me please put it in a post office mailbox, do not put it in your own personal mailbox for the mailman to pick up, as there are more and more incidences of things being stolen out of the mailbox.

4)  Introduction of new participants and open discussion of issues and questions of interest (2:45-3:30 – Pat) 

Bruce: When we used to meet in person I looked around the room and of the 40 some attendees only one person was nonwhite and when I look around our group today, I’m glad to see that Rory is participating because he’s the only non white person. Can’t we invite more people who aren’t like us to have different opinions and experiences, more diverse, in this day and age.

Terry: It was hard to find the support group, I found the support group by going to the Foundation for Peripheral Neuropathy I was Googling around. I mentioned that to my neurologist and he said he knew about it but didn’t tell me.

Pat: There is a definite disconnect. We used to have a flyer that we could put up in doctors offices if they agreed to it, that will at least might alert people, because part of the issue is simply how do we get the word out, we used to do it in print now we’re trying to do it electronically.

Brenda: I don’t know how, but we need to get the word out to these doctors that once you’ve got it that here’s a group you can go to that will support you or will answer some of your questions.  I tried to get my neurologist to hand out flyers and I’m sure that never happened. I don’t know what we can do to get doctors to understand that people with PN can really benefit from talking to other people and sharing their experiences.

Pat: We used to post the flyer on library bulletin boards before COVID. We put it in the Golden Gazette and we got quite a few responses from that, it’s simply trying to find the likely communities. 

Steve: I’m trying to get a group started here in Friendship Heights in Maryland, and unfortunately I’ve only gotten three responses so far, and I want to get a minimum of five to get it started so I’ve tried a couple of times. it’s a little disappointing, but let me speak to Bruce’s point, and a couple other comments, we’ve had as many as seven or eight African Americans in our group. Some of them for quite a considerable period of time. Outreach is a very important part of what we could be doing, and we had a couple of people who would contact for example the Golden Gazette and a dozen or more people joined just from reading the Golden Gazette. The pandemic put a stop to all of that and now that we’re resuming life again we need to add to membership coordinator and website outreach, someone to help with outreach to take our notice and send it to the Golden Gazette, find out the deadlines for these groups. In terms of dealing with the minority community maybe there’s a public interest health group in the minority community that’s trying to work on minority health issues in the context of COVID, we need an outreach person to contact various groups to really get the word out.

Terry: Next Door is a very good place to publicize our group and put a link to our website.

Brenda: If someone would design a handout in English and in Spanish, and then email it to us that we could print it out. So if we had something simple like that then we could look for places in our community  (e.g. our church,  local library ) to post someplace we felt might be a good place for it.

Bruce:  we need somebody to post it in the black community centers, in Latino communities, give it to the pastors of the churches to reach out to the minorities that are not with us.

Steve: We have a flyer that Mike Foxworth helped us design. I will send it to Pat to update and then we can start with that and we can send it to everybody again. It has a good graphic on it, and it has information for people to contact us. We did a very good job before COVID through 2019  and had as many as 80 people come to meetings using flyers.

Pat: we had tremendous response at the Expos that we went to as well.

Steve: we need to add Outreach as a category. We had Tom Pascoe, who was drafting notices and we had Lynn and Robert M. the couple that wrote the article in the Washington Post that got a lot of attention, almost gave us nationwide attention. Pat may want to reach out to them since they haven’t been involved.

Bob Q:  Brain and Life is a free subscription from the American Academy of Neurologists  https://www.brainandlife.org/  . I’ve been reading this magazine now for about a year and a half, and not one article dealing with Peripheral Neuropathy. There is no section on Neuropathy. Does it imply a professional neurology disposition, not to give credence to the Foundation for Peripheral Neuropathy?

Pat: I think it’s more likely that no one has approached them, no one has agreed to write an article. The Washington Post certainly didn’t print anything about peripheral neuropathy until Lyn and Bob agreed to tell their story. Someone could be writing an article to raise some public awareness on how many people are suffering from it, how do we connect them with support groups like ours, and equally important, how do we expand the number of support groups at the local level, that people can attend beyond zooming. 

Steve: I was in touch with the predecessor magazine to Brain in Life. I think it was called Neurology Now. I pressed them on the exact same points Bob quick mentioned, to list under Resources, a peripheral neuropathy section to have articles on peripheral neuropathy. The only cover article they’ve had on peripheral neuropathy that I’m aware of in the last five or 10 years was a cover article about Jerry Mathers, who was on Leave It to Beaver. They basically treat neuropathy, as the orphan disease that we know it has been treated by the medical community and the public generally in Congress, you know it’s not Alzheimer’s it’s not stroke, it’s not epilepsy, even though so many more people have it, than have all those other neurological diseases combined, that’s part of our mission statement we state that it should get so much more attention. Anyone who gets the Brain in Life magazine please confirm this omission and if so we should organize a letter to the editor to encourage them to have more articles. Terry’s statement she wants to submit to the foundation was excellent and might serve to submit to Brain for Life as well to give perspective of how a support group really can make a difference. We can suggest they should do a whole article on neuropathy from the angle of a support group member what’s it like being in a support group.

Rory: I just wanted to talk about the diversity issue. I think that the African American community as well as the Latino community have different dynamics going on and lack of access to health care. My guess is that is probably why they’re not seeing places where they can learn about these type of support groups. Since diabetes impacts a large segment of the African American community, maybe there’s some way we can target that group as a start. My IVig situation had a complication with overload and my body couldn’t get rid of fluids fast enough causing high blood pressure and heart palpitations so the last four weeks I’ve switched to subcutaneous infusion. It’s working well and I can feel the impact of it sooner. I do it twice a week. The maker of Hizentra has assigned me a caseworker and a nurse who call me and give me different suggestions like how I can put the needles in. 

Steve: if that doctor does not come through and Mike Foxworth had an occupational therapist in mind and also suggested a return visit from Dr Jason Wong. I think we should try to get a speaker for August 7. We’re going to skip Labor Day weekend and have group discussion on September 11. We have Joseph Terpenning on October 2 who owns infinite technologies, which is one of the leading areas supportive device makers. Thanks to Joanne, we got Dr. Charlotte Sumner, who’s a neurologist in Northern Virginia and her partner, Brett McCray for November 6th. December 4th is group discussion/holiday party. 

Terry: The Foundation has a list of pain management doctors and neurologists   https://www.foundationforpn.org/living-well/neurologist-directory/  and there’s a doctor in Great Falls, Mary Babcock, DO;  Artius Integrative Medicine, (844) 927-8487 that someone recommended to the foundation to be on the list that might be interesting to be a speaker. We will have our happy hour the third Thursday in July. 

Bruce: The second Saturday of every month at two o’clock is the Houston group of WNS monthly meeting. So if you change our meeting to the second Saturday to avoid holiday weekends you’ll be in direct conflict with another meeting.  

Rodney: I guess we ought to try to get that homecare person back that couldn’t make it the last time. 

Bruce: I would like to work with Rory to organize a way to increase diversity and use the black churches and the black community libraries to publicize our peripheral neuropathy support group: what it is, and who we are, and send him some brochures that he could post or send to friends to post. Please send Rory my phone number and email, I’d like to talk to him how we could work together on my idea.

Terry: I like the idea of doing the flyer in Spanish also in libraries. It’s a question of access to health care. I know there’s an African American doctor who’s actually a podiatrist and maybe we could get him on board to pass it.

Pat: I think we should all work on external resources, we all have connections. I work at a food bank. I know Judd works at a food bank, they could have a flyer put in their bags of groceries, it would be a huge way to at least address my Hispanic community. So think outside the box on what you can do, not what someone else in the group should do. 

Mary Jo: Rory mentioned that he was going to brainstorm how he could talk to people who had diabetes, African Americans with diabetes .

Steve: We’ve made an effort in the past to reach out to the American Diabetes Association, and try to get a speaker from there and establish contact with them without success. I can work with Rory.  

Pat: Put on the flyer the information for October meeting.

5. Vote on meeting in July and/or August (3:50-4:00 – Pat) Pat: We are going to skip the July meeting, and move to the next meeting on August 7. I will still work on getting Brenda’s pain specialist pain specialist for the August 7 meeting.

As always, please feel free to socialize and/or continue discussion after the meeting closes at 4:00

PN Support Group Schedule: June-Dec. 2021

1. June 5- Group discussion

2. July 10- Party/Happy Hour?

3. Aug. 7- Mike Foxworth’s occupational therapist? OR Mike’s suggestion of return visit from Dr. Jason Wong, VCU? OR Pat’s suggestion of a Dr. Chun(?), a “vascular radiologist?” 

4. Sept. 11- Group discussion

5. Oct. 2-  3rd visit from Joe Terpenning, Infinite Technologies, leading area supportive device maker

6. Nov. 6- Drs. Charlotte Sumner & Brett McCray, Neurologists

7.  Dec. 4- Group discussion/Holiday party

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