[Nfb-krafters-korner] HPS

Wed Feb 8 02:12:53 UTC 2012

Heather,

That is so cool.  I'm vegan and attended a Health Educator training in 2009. 
I learned about Crohn's disease but never heard of HPS.  In addition, I 
worked for the division of  Blind Services in Florida from 2005-2008.  I had 
several clients with Alvinism but none with HPS.  I thought  I'd heard of 
lots of syndromes but, this is a new one.  Thanks for sharing.  I'd like to 
know if certain folks would be helped by becoming vegetarian or vegan.  Do 
you have any information on that?  Hey, this might be off-topic but, 
sometimes, someone presents something interesting and new and it's okay. 
Thanks again.

Regards,

Denise Shaible

-----Original Message----- 
From: Zimmer, Cindy
Sent: Tuesday, February 07, 2012 9:21 AM
To: List for blind crafters and artists
Subject: Re: [Nfb-krafters-korner] HPS

Thanks Heather!

-----Original Message-----
From: nfb-krafters-korner-bounces at nfbnet.org 
[mailto:nfb-krafters-korner-bounces at nfbnet.org] On Behalf Of Heather 
Kirkwood
Sent: Tuesday, February 07, 2012 11:18 AM
To: List for blind crafters and artists
Subject: Re: [Nfb-krafters-korner] HPS

Thanks Cindy! The list is so busy I was leery of posting something that was 
sort of off topic. You know, if you have a client with HPS, they might have 
also not ever heard of it. Unfortunately, most people don't come to us until 
they've had something bad happen. When I was a voc rehab client in college I 
had no idea I had HPS. I wasn't diagnosed until I was 29. I knew I had 
albinism, but had never heard of HPS. I did have Crohn's. Now, I 
occassionally give training talks to voc rehab groups. I tell them it's just 
like having a client with diabetes. To reach your greatest potential, you've 
got to be healthy. A client with albinism that seems unmotivated, or doesn't 
seem to complete anything might just be lazy, but they also might not be 
well and not even realize it. When you get sick gradually, it's your new 
normal. You don't realize how sick you are until you start to feel better 
again.

Heather Kirkwood
Director of Outreach, Vice President
Hermansky-Pudlak Syndrome Network
One South Road
Oyster Bay, NY 11771
1 (800) 789-9HPS
www.hpsnetwork.org

Personal blog: www.heatherkirkwood.blogspot.com

Search the Web at www.goodsearch.com and choose the HPS Network as your 
charity!

HPS New York Conference - March 16-18, 2012

--- On Tue, 2/7/12, Zimmer, Cindy <cindy.zimmer at nebraska.gov> wrote:

From: Zimmer, Cindy <cindy.zimmer at nebraska.gov>
Subject: [Nfb-krafters-korner] HPS
To: "List for blind crafters and artists" <nfb-krafters-korner at nfbnet.org>
Date: Tuesday, February 7, 2012, 11:07 AM

Heather,
One thing I know with this group is we are all willing to learn.  Thank you 
for sharing about the Hermansky-Pudlak Syndrome.  I had not heard of this 
disorder.

I now have a resource in case I have a client with HPS.

Thanks,
Cindy

-----Original Message-----
From: nfb-krafters-korner-bounces at nfbnet.org 
[mailto:nfb-krafters-korner-bounces at nfbnet.org] On Behalf Of Heather 
Kirkwood
Sent: Monday, February 06, 2012 5:35 PM
To: List for blind crafters and artists
Subject: Re: [Nfb-krafters-korner] St. Patty's Day

Sorry - Hermansky-Pudlak Syndrome. It's a type of albinism that also 
involves a bleeding disorder. Some types also cause Crohn's disease and 
pulmonary fibrosis - an ultiimately fatal lung disease. The vision issues 
are due to the lack of pigment in eye development. Our conference tends to 
be a little different than say, an NFB conference, as we tend to focus more 
on medical issues. HPS is so very rare that our families can't even always 
rely on their local docs to know specifics about treatment etc. There are 
only a few docs in the world that really know much about it. The conference 
gives the families a chance to learn from them and meet with them to ask 
questions etc.

Sorry - hope that wasn't too off topic! Grin!

Heather Kirkwood
Director of Outreach, Vice President
Hermansky-Pudlak Syndrome Network
One South Road
Oyster Bay, NY 11771
1 (800) 789-9HPS
www.hpsnetwork.org

Personal blog: www.heatherkirkwood.blogspot.com

Search the Web at www.goodsearch.com and choose the HPS Network as your 
charity!

HPS New York Conference - March 16-18, 2012

--- On Mon, 2/6/12, Zimmer, Cindy <cindy.zimmer at nebraska.gov> wrote:

From: Zimmer, Cindy <cindy.zimmer at nebraska.gov>
Subject: Re: [Nfb-krafters-korner] St. Patty's Day
To: "List for blind crafters and artists" <nfb-krafters-korner at nfbnet.org>
Date: Monday, February 6, 2012, 5:06 PM

HPS???

-----Original Message-----
From: nfb-krafters-korner-bounces at nfbnet.org 
[mailto:nfb-krafters-korner-bounces at nfbnet.org] On Behalf Of Heather 
Kirkwood
Sent: Monday, February 06, 2012 4:57 PM
To: List for blind crafters and artists
Subject: Re: [Nfb-krafters-korner] St. Patty's Day

I tried it twice more, and on the second try, it worked! Probably a problem 
on my end. Thanks!!!!

We have our HPS conference coming up. Our kids always do a craft project. We 
try to either make it something that we can give to our researchers as a 
gift, or something that ties into our banquet dinner.

This year our banquet dinner is on St. Patty's Day. If anyone has any 
inexpensive and kid friendly St. Patty's Day project ideas, I'd LOVE to hear 
them. Grin!

(PS - kids with HPS are usually legally blind - thus the tie -in to the 
list)

Heather Kirkwood
Director of Outreach, Vice President
Hermansky-Pudlak Syndrome Network
One South Road
Oyster Bay, NY 11771
1 (800) 789-9HPS
www.hpsnetwork.org

Personal blog: www.heatherkirkwood.blogspot.com

Search the Web at www.goodsearch.com and choose the HPS Network as your 
charity!

HPS New York Conference - March 16-18, 2012

--- On Mon, 2/6/12, Blindhands at aol.com <Blindhands at aol.com> wrote:

From: Blindhands at aol.com <Blindhands at aol.com>
Subject: Re: [Nfb-krafters-korner] A website for all!
To: nfb-krafters-korner at nfbnet.org
Date: Monday, February 6, 2012, 4:48 PM

Heather,

I did copy and pasted the website
_http://mysite.mweb.co.za/residents/stephlin/_
(http://mysite.mweb.co.za/residents/stephlin/)

Joyce  Kane
So try this  as it did come out as a link before I sent this email.
_www.KraftersKorner.org_ (http://www.krafterskorner.org/)
Blindhands at AOL.com

In a message dated 2/6/2012 5:40:18 P.M. Eastern Standard Time,
hkdawn at yahoo.com writes:

I'm  having trouble getting the site to come up. Is it just me? This
Webpage cannot  be found is sort of a good discription for my brain today, 
so it
wouldn't  surprise me.

Heather Kirkwood
Director of Outreach, Vice  President
Hermansky-Pudlak Syndrome Network
One South Road
Oyster  Bay, NY 11771
1 (800) 789-9HPS
www.hpsnetwork.org

Personal  blog: www.heatherkirkwood.blogspot.com

Search the Web at  www.goodsearch.com and choose the HPS Network as your
charity!

HPS New York Conference - March 16-18, 2012

--- On  Mon, 2/6/12, Blindhands at aol.com <Blindhands at aol.com>  wrote:

From: Blindhands at aol.com  <Blindhands at aol.com>
Subject: [Nfb-krafters-korner] A website for  all!
To: nfb-krafters-korner at nfbnet.org
Date: Monday, February 6, 2012,  4:31 PM

This is Lindey's website.  Check it  out!

Accessible Arts and Crafts - Paper Crafts for blind and visually  impaired
children and  adults
_http://mysite.mweb.co.za/residents/stephlin/_
(http://mysite.mweb.co.za/residents/stephlin/)
This  site is the  home of the Accessible Origami Project, which is part of
an effort   to make the art of paper folding accessible to visually
impaired
children
and  adults around the world. Accessible Origami - File  Series - 1
contains
text-only  folding instructions for 20 origami  models. These instructions
are
provided  free of charge and are  aimed at beginners with no prior
experience of paper  folding and may  also be used by teachers and
instructors who
would
like to  teach  origami to visually impaired children or adults.
Text-only  instructions  as well as links to find pictures and/or graphical

information are available for  the following easy origami  models
CORNER BOOKMARK; SAILBOAT; CUP; HOUSE;  PARTY HAT; GIFT BOW;  FORTUNE
TELLER; TRADITIONAL MASU OR SQUARE BOX; TRADITIONAL   RECTANGULAR BOX;
RECTANGULAR
BOX/TRAY;
EASY ENVELOPE - VARIATION 1  (from a  square); EASY ENVELOPE - VARIATION 2
(from a rectangle);  OPEN POUCH OR PACKET;  CLOSED POUCH OR PACKET;
DECORATIVE
DISH;
CROWN; CUBE OR DICE; SAMURAI HELMET;  MINI FOLDER OR WALLET;  INSIDE-OUT
SQUARE BOX; BULKY BOWL; HEART (from a square);  SQUARE  BASKET; POCKET
CARD.
... with many more models to be added in   future!

Joyce  Kane
_www.KraftersKorner.org_  (http://www.krafterskorner.org/)
Blindhands at AOL.com
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