[Nfb-krafters-korner] HPS

Tue Feb 7 17:18:04 UTC 2012

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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