[blindkid] Baby with retinoblastoma

Deborah Kent Stein dkent5817 at att.net
Mon Nov 8 15:37:15 UTC 2010



There's also a list chiefly for parents of children with RB.  It's not an 
NFB group, I think it's through Yahoo groups.  It offers a lot of medical 
information that may be very valuable.

Debbie

----- Original Message ----- 
From: "David Andrews" <dandrews at visi.com>
To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
<blindkid at nfbnet.org>
Sent: Sunday, November 07, 2010 8:33 PM
Subject: Re: [blindkid] Baby with retinoblastoma


> We do have a list on the server for those with Retinoblastoma.
>
> It is mostly, if not all adults, and isn't very active, but they may be of 
> some help and support.  You can subscribe at:
>
> http://www.nfbnet.org/mailman/listinfo/rb-support_nfbnet.org
>
> Dave
>
>
>
> At 04:19 PM 11/2/2010, you wrote:
>
>>Hello everyone,
>>My friend's 5 month old son was recently diagnosed with bilateral 
>>retinoblastoma. I'm hoping to find someone whose child has the same 
>>diagnosis and is able/willing to e-talk with her. When we rec'd our son's 
>>diagnosis of ONH it helped to talk another mom who had a child older than 
>>mine with the same diagnosis.
>>Thanks a lot.
>>Janet
>> > From: blindkid-request at nfbnet.org
>> > Subject: blindkid Digest, Vol 79, Issue 1
>> > To: blindkid at nfbnet.org
>> > Date: Tue, 2 Nov 2010 12:00:18 -0500
>> >
>> > Send blindkid mailing list submissions to
>> >       blindkid at nfbnet.org
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>> > or, via email, send a message with subject or body 'help' to
>> >       blindkid-request at nfbnet.org
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>> >       blindkid-owner at nfbnet.org
>> >
>> > When replying, please edit your Subject line so it is more specific
>> > than "Re: Contents of blindkid digest..."
>> >
>> >
>> > Today's Topics:
>> >
>> >    1. Do you need money for college? (Rovig,  Lorraine)
>> >    2. Questions about rulers and perpetual calendars (Wendy Molle)
>> >    3. Re: Questions about rulers and perpetual calendars
>> >       (Richard Holloway)
>> >    4. Re: Questions about rulers and perpetual calendars (Sally Thomas)
>> >    5. Re: Questions about rulers and perpetual calendars
>> >       (Olivero, Treva)
>> >    6. Re: Questions about rulers and perpetual calendars
>> >       (Richard Holloway)
>> >    7. Re: Questions about rulers and perpetual calendars
>> >       (Richard Holloway)
>> >
>> >
>> > ----------------------------------------------------------------------
>> >
>> > Message: 1
>> > Date: Mon, 01 Nov 2010 19:45:52 -0500
>> > From: "Rovig, Lorraine" <LRovig at nfb.org> (by way of David Andrews
>> >       <dandrews at visi.com>)
>> > To: david.andrews at nfbnet.org
>> > Subject: [blindkid] Do you need money for college?
>> > Message-ID: <auto-000175947722 at mailfront2.g2host.com>
>> > Content-Type: text/plain; charset="us-ascii"; format=flowed
>> >
>> >
>> > NATIONAL FEDERATION OF THE BLIND - The NFB Scholarship Program
>> > application is now available online.  This national scholarship
>> > program is available solely to persons who are legally blind and
>> > living in the United States or Puerto Rico.  There are 30 awards,
>> > from $12,000 to $3,000.  In addition, each winner will be assisted to
>> > attend the NFB Annual Convention for 2011 in Orlando, Florida.  The
>> > annual contest begins the first week of November 2010; all documents
>> > required from the applicants must be postmarked by the March 31,
>> > 2011, deadline.  Applications and full details are available online
>> > at
>> > <http://www.nfb.org/scholarships>www.nfb.org/scholarships.  Questions
>> > may be emailed to <mailto:scholarships at nfb.org>scholarships at nfb.org.
>> > Cordially,
>> >
>> > Chairperson Patti Chang, Esq.
>> > NFB Scholarship Committee
>> > NATIONAL FEDERATION OF THE BLIND
>> > 200 East Wells Street, Baltimore, MD 21230
>> >        at Jernigan Place
>> > Office:  (410) 659-9314, x2415;
>> > E-mail:  scholarships at nfb.org;
>> > Website:  www.nfb.org/scholarships
>> >
>> >
>> >
>> >
>> >
>> >
>> >
>> > __________ Information from ESET Smart Security, version of virus
>> > signature database 5583 (20101101) __________
>> >
>> > The message was checked by ESET Smart Security.
>> >
>> > <http://www.eset.com>http://www.eset.com
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 2
>> > Date: Tue, 02 Nov 2010 10:37:25 -0400
>> > From: "Wendy Molle" <wmolle at schoharie.k12.ny.us>
>> > To: <blindkid at nfbnet.org>
>> > Subject: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID: <4CCFE9E50200003600006A37 at mail.schoharie.k12.ny.us>
>> > Content-Type: text/plain; charset=US-ASCII
>> >
>> > Hi!
>> >     As part of our 4th grade math curriculum, our students need
>> to use rulers that go down to 16ths of an inch AND perpetual calendars. 
>> Does anyone know where we can locate Braille versions of these?
>> >      We and our TVI have not been able to find anything.  We
>> tried to make a ruler, but with no success.  When we tried to type in the 
>> perpetual calendar to emboss it, it got all garbled and unusable. 
>> Although I am sure it could be sorted out, it would be very 
>> time-consuming.  We are hoping that someone knows where we can purchase 
>> one.
>> > Thanks for your help!
>> > Wendy Molle
>> > Schoharie Elementary
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 3
>> > Date: Tue, 2 Nov 2010 10:53:54 -0400
>> > From: Richard Holloway <rholloway at gopbc.org>
>> > To: "NFBnet Blind Kid Mailing List,   \(for parents of blind 
>> > children\)"
>> >       <blindkid at nfbnet.org>
>> > Subject: Re: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID: <7A1A1CD8-4B41-4E65-9AAC-413AF5C48848 at gopbc.org>
>> > Content-Type: text/plain; charset=us-ascii
>> >
>> > The rulers I've seen and used go down to 1/8th of an inch. At
>> some point, tactile rulers simply would not seem not a realistic option. 
>> I suspect the tactile resolution limit would vary from person to person, 
>> but how large is a braille dot, for example? That's about 16th of an 
>> inch, right?
>> >
>> > Can a larger scale be used for illustration to explain the
>> concept and then larger exhibits might be measured? 2x scale would make a 
>> standard 1/8" ruler work if that were an option. We have a second grader 
>> with no light perception, so I'm curious to learn what works as I suspect 
>> we'll be hearing about this problem here in year or two as well.
>> >
>> >
>> > On Nov 2, 2010, at 10:37 AM, Wendy Molle wrote:
>> >
>> > > Hi!
>> > >    As part of our 4th grade math curriculum, our students need
>> to use rulers that go down to 16ths of an inch AND perpetual calendars. 
>> Does anyone know where we can locate Braille versions of these?
>> > >     We and our TVI have not been able to find anything.  We
>> tried to make a ruler, but with no success.  When we tried to type in the 
>> perpetual calendar to emboss it, it got all garbled and unusable. 
>> Although I am sure it could be sorted out, it would be very 
>> time-consuming.  We are hoping that someone knows where we can purchase 
>> one.
>> > > Thanks for your help!
>> > > Wendy Molle
>> > > Schoharie Elementary
>> > > _______________________________________________
>> > > blindkid mailing list
>> > > blindkid at nfbnet.org
>> > > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > > To unsubscribe, change your list options or get your account
>> info for blindkid:
>> > >
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/rholloway%40gopbc.org
>> >
>> >
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 4
>> > Date: Tue, 2 Nov 2010 10:13:44 -0500
>> > From: "Sally Thomas" <seacknit at gmail.com>
>> > To: "NFBnet Blind Kid Mailing List,   \(for parents of blind 
>> > children\)"
>> >       <blindkid at nfbnet.org>
>> > Subject: Re: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID: <06D44FD5387D493BBC2F2B5144D0DE30 at OwnerPC>
>> > Content-Type: text/plain; format=flowed; charset="iso-8859-1";
>> >       reply-type=original
>> >
>> > I'll be interested to hear about the ruler.  I have not found
>> anything that
>> > measures less than 1/4".  I did make a tactile ruler with hot glue and 
>> > a
>> > wooden ruler.  The hot glue stays on really well.
>> >
>> > Sally Thomas
>> > ----- Original Message -----
>> > From: "Wendy Molle" <wmolle at schoharie.k12.ny.us>
>> > To: <blindkid at nfbnet.org>
>> > Sent: Tuesday, November 02, 2010 9:37 AM
>> > Subject: [blindkid] Questions about rulers and perpetual calendars
>> >
>> >
>> > > Hi!
>> > >    As part of our 4th grade math curriculum, our students need to use
>> > > rulers that go down to 16ths of an inch AND perpetual calendars. 
>> > > Does
>> > > anyone know where we can locate Braille versions of these?
>> > >     We and our TVI have not been able to find anything.  We
>> tried to make
>> > > a ruler, but with no success.  When we tried to type in the perpetual
>> > > calendar to emboss it, it got all garbled and unusable.  Although I 
>> > > am
>> > > sure it could be sorted out, it would be very time-consuming.  We are
>> > > hoping that someone knows where we can purchase one.
>> > > Thanks for your help!
>> > > Wendy Molle
>> > > Schoharie Elementary
>> > > _______________________________________________
>> > > blindkid mailing list
>> > > blindkid at nfbnet.org
>> > > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > > To unsubscribe, change your list options or get your account info for
>> > > blindkid:
>> > >
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/seacknit%40gmail.com
>> >
>> >
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 5
>> > Date: Tue, 2 Nov 2010 11:29:07 -0400
>> > From: "Olivero, Treva" <TEOlivero at nfb.org>
>> > To: "NFBnet Blind Kid Mailing List,   (for parents of blind children)"
>> >       <blindkid at nfbnet.org>
>> > Subject: Re: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID:
>> > 
>> > <7638A85981599142811F69FBB9508B6B035CA595 at FPNTEXCBE01.services.local>
>> > Content-Type: text/plain;     charset="us-ascii"
>> >
>> > Hi Wendy,
>> > There is a device called a click rule that measures within a sixteenth
>> > of an inch. We sell it in the NFB Independence Market. Our NFB training
>> > centers use it in shop classes to measure accurately.
>> >
>> > http://secure.nfb.org/ecommerce/asp/product.asp?product=151&ph=search&ke
>> > ywords=click,ruler&recor=1&SearchFor=any&PT_ID=all
>> >
>> > Also, the American Action Fund for Blind Children and Adults has 
>> > created
>> > Braille 2011 calendars. You can also find them in the NFB Independence
>> > Market at:
>> >
>> > http://secure.nfb.org/ecommerce/asp/product.asp?product=887&ph=search&ke
>> > ywords=Braille,calendar&recor=11&SearchFor=any&PT_ID=all
>> >
>> > Treva
>> >
>> > P.S. It takes one text! You and your colleagues can support the 
>> > programs
>> > of the National Federation of the Blind by making a $10 donation by
>> > texting the word BLIND to 85944.
>> >
>> >
>> >
>> > Treva E. Olivero
>> >
>> > Education Program Specialist
>> >
>> > Jernigan Institute
>> >
>> > NATIONAL FEDERATION OF THE BLIND
>> >
>> > 200 East Wells Street
>> >
>> > at Jernigan Place
>> >
>> > Baltimore, MD 21230
>> >
>> > Phone: (410) 659-9314 ext. 2295
>> >
>> > Fax: (410) 659-5129
>> >
>> > Email: teolivero at nfb.org
>> >
>> >
>> > www.nfb.org/education
>> >
>> >
>> >
>> > -----Original Message-----
>> > From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org]
>> > On Behalf Of Wendy Molle
>> > Sent: Tuesday, November 02, 2010 10:37 AM
>> > To: blindkid at nfbnet.org
>> > Subject: [blindkid] Questions about rulers and perpetual calendars
>> >
>> > Hi!
>> >     As part of our 4th grade math curriculum, our students need to use
>> > rulers that go down to 16ths of an inch AND perpetual calendars.  Does
>> > anyone know where we can locate Braille versions of these?
>> >      We and our TVI have not been able to find anything.  We tried to
>> > make a ruler, but with no success.  When we tried to type in the
>> > perpetual calendar to emboss it, it got all garbled and unusable.
>> > Although I am sure it could be sorted out, it would be very
>> > time-consuming.  We are hoping that someone knows where we can purchase
>> > one.
>> > Thanks for your help!
>> > Wendy Molle
>> > Schoharie Elementary
>> > _______________________________________________
>> > blindkid mailing list
>> > blindkid at nfbnet.org
>> > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > To unsubscribe, change your list options or get your account info for
>> > blindkid:
>> > http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/teolivero%40nf
>> > b.org
>> >
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 6
>> > Date: Tue, 2 Nov 2010 11:44:07 -0400
>> > From: Richard Holloway <rholloway at gopbc.org>
>> > To: "NFBnet Blind Kid Mailing List,   \(for parents of blind 
>> > children\)"
>> >       <blindkid at nfbnet.org>
>> > Subject: Re: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID: <958AF605-ED31-4589-B1AC-F648C72D19AD at gopbc.org>
>> > Content-Type: text/plain; charset=us-ascii
>> >
>> > Interesting idea with the hot glue. With a wide enough ruler one
>> could probably offset lines and make at least eights and here is a 
>> commercial 1/8 inch ruler as well ($3.25):
>> >
>> >
>> http://www.maxiaids.com/products/1274/Tactile-Braille-Ruler.html?utm_source=Froogle&utm_medium=organic&utm_campaign=Froogle&idAff=15225
>> >
>> > I guess in theory you could go quite fine with staggered sets of
>> lines (16ths or probably 32nds with something like raised commercial 
>> printing which could be slightly tactile), but I think once you pass 
>> around 1/8th a child would need a really strong foundation in the concept 
>> because you end up with lines jumping in and out so they can be 
>> differentiated, or it will start to feel like a texture, not distinct 
>> lines or marks. (As far as "proper" braille and similar sized raised 
>> lines, once you get around 16th of an inch, you begin to raise the whole 
>> area and defeat the purpose, right?)
>> >
>> > To be clear, I'm a total novice with this, trying myself to grasp
>> these concepts as I anticipate Kendra's fairly near-term needs. RIght 
>> now, we're just doing second grade measuring in cm and I can already see 
>> this it is quite challenging to measure with accuracy. It is really easy 
>> for the ruler to shift a few mm and if "a few" is more than 5, one is 
>> probably going to assume the next number and get the problem wrong. 
>> Convert this to 16th's or mm, and how is it physically possible? 
>> Visually, for fine measurements one has to close one eye and sight down 
>> the side of things to avoid parallax errors. I get that there are no 
>> parallax problems with tactile rulers, but there are practical physical 
>> limits for precision. Teachers need to work within these limits and 
>> modify the assignments if appropriate.
>> >
>> >
>> >
>> >
>> >
>> > On Nov 2, 2010, at 11:13 AM, Sally Thomas wrote:
>> >
>> > > I'll be interested to hear about the ruler.  I have not found
>> anything that measures less than 1/4".  I did make a tactile ruler with 
>> hot glue and a wooden ruler.  The hot glue stays on really well.
>> > >
>> > > Sally Thomas
>> > > ----- Original Message ----- From: "Wendy Molle"
>> <wmolle at schoharie.k12.ny.us>
>> > > To: <blindkid at nfbnet.org>
>> > > Sent: Tuesday, November 02, 2010 9:37 AM
>> > > Subject: [blindkid] Questions about rulers and perpetual calendars
>> > >
>> > >
>> > >> Hi!
>> > >>   As part of our 4th grade math curriculum, our students need
>> to use rulers that go down to 16ths of an inch AND perpetual calendars. 
>> Does anyone know where we can locate Braille versions of these?
>> > >>    We and our TVI have not been able to find anything.  We
>> tried to make a ruler, but with no success.  When we tried to type in the 
>> perpetual calendar to emboss it, it got all garbled and unusable. 
>> Although I am sure it could be sorted out, it would be very 
>> time-consuming.  We are hoping that someone knows where we can purchase 
>> one.
>> > >> Thanks for your help!
>> > >> Wendy Molle
>> > >> Schoharie Elementary
>> > >> _______________________________________________
>> > >> blindkid mailing list
>> > >> blindkid at nfbnet.org
>> > >> http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > >> To unsubscribe, change your list options or get your account
>> info for blindkid:
>> > >>
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/seacknit%40gmail.com
>> > >
>> > >
>> > > _______________________________________________
>> > > blindkid mailing list
>> > > blindkid at nfbnet.org
>> > > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > > To unsubscribe, change your list options or get your account
>> info for blindkid:
>> > >
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/rholloway%40gopbc.org
>> >
>> >
>> >
>> >
>> > ------------------------------
>> >
>> > Message: 7
>> > Date: Tue, 2 Nov 2010 11:48:47 -0400
>> > From: Richard Holloway <rholloway at gopbc.org>
>> > To: "NFBnet Blind Kid Mailing List,   \(for parents of blind 
>> > children\)"
>> >       <blindkid at nfbnet.org>
>> > Subject: Re: [blindkid] Questions about rulers and perpetual calendars
>> > Message-ID: <FFDFBBA6-99D0-493A-A2CF-DE9E271406E5 at gopbc.org>
>> > Content-Type: text/plain; charset=us-ascii
>> >
>> > Treva,
>> >
>> > That is an interesting ruler. Can you explain how the scale is read?
>> >
>> > Are there braille numbers for inches or must one count the whole
>> way up the scale? I can't seem to tell from the description and the 
>> photos is too small to make that out.
>> >
>> >
>> >
>> > Thanks.
>> >
>> >
>> >
>> > On Nov 2, 2010, at 11:29 AM, Olivero, Treva wrote:
>> >
>> > > Hi Wendy,
>> > > There is a device called a click rule that measures within a 
>> > > sixteenth
>> > > of an inch. We sell it in the NFB Independence Market. Our NFB 
>> > > training
>> > > centers use it in shop classes to measure accurately.
>> > >
>> > > http://secure.nfb.org/ecommerce/asp/product.asp?product=151&ph=search&ke
>> > > ywords=click,ruler&recor=1&SearchFor=any&PT_ID=all
>> > >
>> > > Also, the American Action Fund for Blind Children and Adults has 
>> > > created
>> > > Braille 2011 calendars. You can also find them in the NFB 
>> > > Independence
>> > > Market at:
>> > >
>> > > http://secure.nfb.org/ecommerce/asp/product.asp?product=887&ph=search&ke
>> > > ywords=Braille,calendar&recor=11&SearchFor=any&PT_ID=all
>> > >
>> > > Treva
>> > >
>> > > P.S. It takes one text! You and your colleagues can support the 
>> > > programs
>> > > of the National Federation of the Blind by making a $10 donation by
>> > > texting the word BLIND to 85944.
>> > >
>> > >
>> > >
>> > > Treva E. Olivero
>> > >
>> > > Education Program Specialist
>> > >
>> > > Jernigan Institute
>> > >
>> > > NATIONAL FEDERATION OF THE BLIND
>> > >
>> > > 200 East Wells Street
>> > >
>> > > at Jernigan Place
>> > >
>> > > Baltimore, MD 21230
>> > >
>> > > Phone: (410) 659-9314 ext. 2295
>> > >
>> > > Fax: (410) 659-5129
>> > >
>> > > Email: teolivero at nfb.org
>> > >
>> > >
>> > > www.nfb.org/education
>> > >
>> > >
>> > >
>> > > -----Original Message-----
>> > > From: blindkid-bounces at nfbnet.org 
>> > > [mailto:blindkid-bounces at nfbnet.org]
>> > > On Behalf Of Wendy Molle
>> > > Sent: Tuesday, November 02, 2010 10:37 AM
>> > > To: blindkid at nfbnet.org
>> > > Subject: [blindkid] Questions about rulers and perpetual calendars
>> > >
>> > > Hi!
>> > >    As part of our 4th grade math curriculum, our students need to use
>> > > rulers that go down to 16ths of an inch AND perpetual calendars. 
>> > > Does
>> > > anyone know where we can locate Braille versions of these?
>> > >     We and our TVI have not been able to find anything.  We tried to
>> > > make a ruler, but with no success.  When we tried to type in the
>> > > perpetual calendar to emboss it, it got all garbled and unusable.
>> > > Although I am sure it could be sorted out, it would be very
>> > > time-consuming.  We are hoping that someone knows where we can 
>> > > purchase
>> > > one.
>> > > Thanks for your help!
>> > > Wendy Molle
>> > > Schoharie Elementary
>> > > _______________________________________________
>> > > blindkid mailing list
>> > > blindkid at nfbnet.org
>> > > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > > To unsubscribe, change your list options or get your account info for
>> > > blindkid:
>> > > http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/teolivero%40nf
>> > > b.org
>> > >
>> > > _______________________________________________
>> > > blindkid mailing list
>> > > blindkid at nfbnet.org
>> > > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> > > To unsubscribe, change your list options or get your account
>> info for blindkid:
>> > >
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/rholloway%40gopbc.org
>> >
>> >
>> >
>> >
>> > ------------------------------
>> >
>> > _______________________________________________
>> > blindkid mailing list
>> > blindkid at nfbnet.org
>> > http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> >
>> >
>> > End of blindkid Digest, Vol 79, Issue 1
>> > ***************************************
>>
>>_______________________________________________
>>blindkid mailing list
>>blindkid at nfbnet.org
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>>To unsubscribe, change your list options or get your account info for 
>>blindkid:
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>>
>>
>>__________ Information from ESET Smart Security, version of virus 
>>signature database 5586 (20101102) __________
>>
>>The message was checked by ESET Smart Security.
>>
>>http://www.eset.com
>
>                         David Andrews:  dandrews at visi.com
> Follow me on Twitter:  http://www.twitter.com/dandrews920
>
>
> _______________________________________________
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> blindkid at nfbnet.org
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> blindkid:
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