[Diabetes-talk] DAN Seminar in Dallas

Sun Jun 24 21:53:30 UTC 2012

Hi Mike,
Thanks for pointing out the ineffectiveness of doing a petition. I hadn't 
thought of the fact that emails could be forged. It's a great point to use 
with my friends who are constantly signing petitions for so many issues.

--------------------------------------------------
From: "Mike Freeman" <k7uij at panix.com>
Sent: Sunday, June 24, 2012 3:07 PM
To: "'Diabetes Talk for the Blind'" <diabetes-talk at nfbnet.org>
Subject: Re: [Diabetes-talk] DAN Seminar in Dallas

> Chanelle:
>
> First, although I have no objection to some sort of on-line petition about
> the Pump-mate, it is my view that such efforts are worth just about as 
> much
> paper as they take -- nothing. Why do I believe this? Because it's
> impossible to verify signatures on an on-line petition. So en enterprising
> individual or group of individuals could write such a petition and then
> spoof a bazillion different email addresses and sign as each one. So I
> consider such efforts wasted bandwidth. I realize, however, that there are
> plenty of folks who disagree with me.
>
> Second, I may not be the right person to discuss the Technology Bill of
> Rights or the paired-down version we pushed this year -- the home 
> Appliances
> Accessibility Act (HAAA) which specifically covers home medical devices. I
> think Lauren McClarney of NFB staff is handling this issue. However, it is
> my impression that it has not gone anywhere this year and I believe will 
> not
> as long as we have such congressional gridlock. But I truly believe this
> bill or one like it will be the only truly effective way to
> persuade/encourage/force manufacturers to produce accessible medical
> devices.
>
> Third, although I truly believe that we need accessible diabetic care
> equipment including accessible insulin pumps, I (who use insulin pens) am 
> a
> bit uncomfortable with the assertion by dedicated pumpers that the pump is
> *necessary* for good diabetes control. If they'd insert "for some people"
> into the preceeding sentence, I'd agree wholeheartedly. And if a person is
> using an insulin pump because other methods didn't work for them (for
> whatever reason), by golly, it (the pump) should be accessible.
>
> In your case, I concur completely that it would be a good idea to get that
> 8% A1C down. Good luck!
>
> To the wall, comrades!
>
> Mike
>
>
> -----Original Message-----
> From: diabetes-talk-bounces at nfbnet.org
> [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Chanelle Allen
> Sent: Sunday, June 24, 2012 11:42 AM
> To: Diabetes Talk for the Blind
> Subject: Re: [Diabetes-talk] DAN Seminar in Dallas
>
> I won't be able to come to convention or make it to the DAN seminar, but I
> am eagerly awaiting the recording--especially with a demonstration of the
> pump mate. I would be happy to help in efforts for persuading Medtronic to
> cooperate with James Kubel. Would it be possible to develop an online
> petition to present to Medtronic? The Reading Rights Coalition sent a
> petition to the Authors' Guild several years ago for not restricting the
> text to speech feature on a Kindle. I don't remember how successful that
> was. Is the Technology Bill of Rights coming any closer to being passed?
> A talking pump or remote is definitely justified due to the fact that
> diabetes is becoming more prevalent, which often results in complications
> such as blindness. Furthermore, insulin pump therapy improves blood 
> glucose
> control. I believe that my A1C would improve if I could have greater 
> control
>
> of my pump and an integrated management system. I need to get my H1C below
> the 8% range where it has been hanging for a while--with or without a
> talking pump.
>
> Chanelle
>
> Chanelle
>
> Chanelle
>
> --------------------------------------------------
> From: "Mike Freeman" <k7uij at panix.com>
> Sent: Sunday, June 24, 2012 12:31 PM
> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
> Subject: [Diabetes-talk] DAN Seminar in Dallas
>
>> Greetings, everyone.
>>
>>
>>
>> At this year's NFB convention in Dallas, the annual seminar and meeting 
>> of
>> the NFB diabetes Action Network, a division of the National Federation of
>> the Blind, will take place in the Rosetta Room, Atrium mezzanine, from
>> 12:30
>> p.m. to 5:00 p.m. on Monday, July 2, 2012. Depending upon how much 
>> general
>> discussion there is at the close of the seminar, we may finish a bit
>> earlier
>> than five o'clock. Registration begins at 12:30 p.m. and the
>> seminar/meeting
>> proper begins at 1:00 p.m. In addition to my presidential report, we will
>> have presentations on both talking prescription pill bottle systems - 
>> that
>> of Prodigy and that of envision America. WE will have a discussion of
>> current efforts to develop an artificial pancreas (some of the systems 
>> are
>> in the early stages of human trials) and the problems of making these
>> systems accessible to the blind from the get-go - something which has to
>> date not been considered. We will have our usual DAN business meeting and
>> hold elections for all DAN officers and members of the DAN Board of
>> Directors. We will have an idea-generating session of possible
>> fund-raisers
>> for DAN along with a discussion of projects DAN members would like to see
>> the division undertake during the coming year.
>>
>>
>>
>> And we will have a wonderful surprise! Some of you may have read on our
>> list
>> of the efforts of Access Solutions, Inc. to develop a fully-accessible
>> remote control that will talk wirelessly to most Medtronics insulin pumps
>> and the glucose meters that go with them, the Pump-mate, thus making an
>> insulin pump system fully accessible to the blind. Access Solutions has
>> run
>> into a stone wall in its efforts to secure a partnership with Medtronics
>> to
>> perfect and obtain FDA approval to market the device once it has been
>> fully
>> developed and tested. Access Solutions has come to NFB to assist in
>> getting
>> Medtronics' attention.
>>
>>
>>
>> Mr. James Kubel of Access Solutions will be at the Dallas convention and
>> will speak at our DAN seminar. I am certain that he will have a Pump-mate
>> device with him that he can demonstrate for us during the seminar.
>>
>>
>>
>> As last year, I will record the seminar although it will of necessity not
>> be
>> of professional quality, I being unable to connect my Victor Reader 
>> Stream
>> or BookSense to a sound system if one is present.
>>
>>
>>
>> Mrs. Jernigan knows the room was quite full last year so we can hope the
>> room this year is a bit larger.
>>
>>
>>
>> I invite everyone interested in diabetes, especially as dealt with by the
>> blind, to come to the DAN seminar, especially those who yearn for an
>> accessible insulin pump. You won't want to miss it!
>>
>>
>>
>> Michael Freeman, President
>>
>> Diabetes Action Network
>>
>> National Federation of the Blind
>>
>>
>>
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>>
>
>
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