[Albinism-talk] New here

Tue Jul 6 13:13:15 CDT 2010

No idea. 

Support solar power in the developing world.
http://www.everyclick.com/solaraid
http://www.solar-aid.org/

________________________________
From: Carmen Camacho <camachoc2000 at aol.com>
To: Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
Sent: Tue, 6 July, 2010 11:51:28
Subject: Re: [Albinism-talk] New here

I hear you, do you know what is yoour visual acuity? 

Sent from my iPhone

On Jul 5, 2010, at 3:04 PM, Abdul Hai <ahai11london at yahoo.co.uk> wrote:

Yeah I love them to but at least they don't hurt my wallet due to universal health care. 
>
> 
>Support solar power in the developing world.
>http://www.everyclick.com/solaraid
>http://www.solar-aid.org/
>
>
>
>
>
>
>
________________________________
From: Carmen Camacho <camachoc2000 at aol.com>
>To: Discussion and Support List Concerning Albinism
> <albinism-talk at nfbnet.org>
>Sent: Mon, 5 July, 2010 19:37:19
>Subject: Re: [Albinism-talk] New here
>
>
>Oh I love those especially when they dialate your pupils
>
>Sent from my iPhone
>
>On Jul 4, 2010, at 10:48 AM, Abdul Hai <ahai11london at yahoo.co.uk> wrote:
>
>
>I was shown a ipod by a friend but the price put me off. 
>>
>>I am looking forward to my yearly eye test which costs nothing as I am registered blind. 
>>
>> 
>>Support solar power in the developing world.
>>http://www.everyclick.com/solaraid
>>http://www.solar-aid.org/
>>
>>
>>
>>
>>
>>
>>
________________________________
From: Carmen Camacho <camachoc2000 at aol.com>
>>To: Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
>>Sent: Sun, 4 July, 2010 15:25:26
>>Subject: Re: [Albinism-talk] New here
>>
>>
>>I live my I phone, yes the cost is a bit of a draw back but I can enlarge the e mails , that for moderating the list serve is great!!! 
>>
>>Sent from my iPhone
>>
>>On Jul 4, 2010, at 10:01 AM, Abdul Hai <ahai11london at yahoo.co.uk> wrote:
>>
>>
>>So you can use a iphone. I was thinking of one but the cost and the fact
>>> that I like bigger screens put me off. 
>>>
>>> 
>>>Support solar power in
>>> the developing world.
>>>http://www.everyclick.com/solaraid
>>>http://www.solar-aid.org/
>>>
>>>
>>>
>>>
>>>
>>>
>>>
________________________________
From: Carmen Camacho <camachoc2000 at aol.com>
>>>To: Discussion and Support List
>>> Concerning Albinism <albinism-talk at nfbnet.org>
>>>Sent: Sun, 4 July, 2010 14:57:25
>>>Subject: Re: [Albinism-talk] New here
>>>
>>>
>>>Hi Abdul!
>>>Thanks!!! Well the weather today is hot and humid also, but I do not miss winter at all!! Fall is my season :-). Glad you are connecting with other people with albinism , I got to say , we can be pretty resourcefull and a lot of fun :-) ( humble too!! )
>>>Carmen
>>>
>>>Sent from my iPhone
>>>
>>>On Jul 4, 2010, at 9:33 AM, Abdul Hai <ahai11london at yahoo.co.uk> wrote:
>>>
>>>
>>>Hi Carmen glad to hear from you. 
>>>>
>>>>How is the weather
>>>> where you are? Here it is hot and sunny and I can't wait for the winter. 
>>>>
>>>> 
>>>>Support solar power in the developing world.
>>>>http://www.everyclick.com/solaraid
>>>>http://www.solar-aid.org/
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
________________________________
From: Carmen Camacho <camachoc2000 at aol.com>
>>>>To: >>>> Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
>>>>Sent: Sun, 4 July, 2010 3:31:12
>>>>Subject: Re: [Albinism-talk] New here
>>>>
>>>>
>>>>Hi Abdul
>>>>I am also new to the group. I been getting e mails for a while but have not introduced myself yet. My name is Carmen Camacho , I am from Puerto Rico nut live in Massachusettes with my two boys and my husband. I also have HPS 1 like Heather and I am also very involved with the HPS netwok. I also attend some of the local
>>>> NFB meetings
>>>>So hello everyone!!!!!
>>>>
>>>>Sent from my iPhone
>>>>
>>>>On Jul 3, 2010, at 10:48
>>>> AM, Abdul Hai <ahai11london at yahoo.co.uk> wrote:
>>>>
>>>>
>>>>Thanks Heather I don't know much about the condicition. 
>>>>>
>>>>>I have never met another person with albinism that I am aware of even though I live in the biggest city in Europe.
>>>>>
>>>>> 
>>>>>Support solar power in the developing world.
>>>>>http://www.everyclick.com/solaraid
>>>>>http://www.solar-aid.org/
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
________________________________
From: Heather Kirkwood <hkdawn at yahoo.com>
>>>>>To: Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
>>>>>Sent: Sat, 3 July, 2010 15:37:37
>>>>>Subject: Re: [Albinism-talk] New here
>>>>>
>>>>>
>>>>>HPS is a very rare type of albinism, and CHS is even more rare. Currently we have about 950 patients on our registry with HPS, and about seven with CHS. They come mostly from the United States, but we do have members all over the world as well. We're actually currently launching a chapter in the UK. I know there are many more out there, but HPS often goes undiagnosed. We're not as sure about CHS. Because CHS patients get so very ill so very young, we think they tend to be picked up - but now we're starting to wonder. 
>>>>> 
>>>>>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 19 - 21, 2010
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
________________________________
 From: Abdul Hai <ahai11london at yahoo.co.uk>
>>>>>To: Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
>>>>>Sent: Sat, July 3, 2010 8:22:48 AM
>>>>>Subject: Re: [Albinism-talk] New here
>>>>>
>>>>>
>>>>>I don't know which one I have. I have not seen a specialist in years just my yearly visit to the optician. How many members does your organisation have Heather? 
>>>>>
>>>>> 
>>>>>Support solar power in the developing world.
>>>>>http://www.everyclick.com/
>>>>>http://www.solar-aid.org/
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
________________________________
 From: Heather Kirkwood <hkdawn at yahoo.com>
>>>>>To: Discussion and Support List Concerning Albinism <albinism-talk at nfbnet.org>
>>>>>Sent: Sat, 3 July,
>>>>> 2010 11:15:14
>>>>>Subject: Re: [Albinism-talk] New here
>>>>>
>>>>>
>>>>>
>>>>> Hello there, 
>>>>>My name is Heather and I live in Kansas City in the US. I have the HPS 1 type of albinism. I now work with the HPS Network, a patient advocacy group for those with this type of albinism. I also work with families that have Chediak-Higashi Syndrome, another rare type of albinism. 
>>>>> 
>>>>>Glad you joined us! 
>>>>>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 19 - 21, 2010
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
________________________________
 From: Abdul Hai <ahai11london at yahoo.co.uk>
>>>>>To: albinism-talk at nfbnet.org
>>>>>Sent: Fri, July 2, 2010 2:24:28 PM
>>>>>Subject: [Albinism-talk] New here
>>>>>
>>>>>
>>>>>Hi I thought that I would introduce myself. I am Abdul Hai and I live in London but I was born in rural Bangladesh. 
>>>>>
>>>>>How many people are on here anyway?
>>>>>
>>>>>It is summer here but I can't wait for the winter for reasons you would understand. 
>>>>>
>>>>> 
>>>>>Support solar power in the developing world.
>>>>>http://www.everyclick.com/
>>>>>http://www.solar-aid.org/
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>_______________________________________________
>>>>>Albinism-talk mailing list
>>>>>Albinism-talk at nfbnet.org
>>>>>http://nfbnet.org/mailman/listinfo/albinism-talk_nfbnet.org
>>>>>To
>>>>> unsubscribe, change your list options or get your account info for Albinism-talk:
>>>>>http://nfbnet.org/mailman/options/albinism-talk_nfbnet.org/camachoc2000%40aol.com
>>>>
>>>_______________________________________________
>>>>Albinism-talk mailing list
>>>>Albinism-talk at nfbnet.org
>>>>http://nfbnet.org/mailman/listinfo/albinism-talk_nfbnet.org
>>>>To
>>>> unsubscribe, change your list options or get your account info for Albinism-talk:
>>>>http://nfbnet.org/mailman/options/albinism-talk_nfbnet.org/camachoc2000%40aol.com
>>>
>>_______________________________________________
>>>Albinism-talk mailing list
>>>Albinism-talk at nfbnet.org
>>>http://nfbnet.org/mailman/listinfo/albinism-talk_nfbnet.org
>>>To unsubscribe, change your list options or get your account info for Albinism-talk:
>>>http://nfbnet.org/mailman/options/albinism-talk_nfbnet.org/camachoc2000%40aol.com
>>
>_______________________________________________
>>Albinism-talk mailing list
>>Albinism-talk at nfbnet.org
>>http://nfbnet.org/mailman/listinfo/albinism-talk_nfbnet.org
>>To unsubscribe, change your list options or get your account info for Albinism-talk:
>>http://nfbnet.org/mailman/options/albinism-talk_nfbnet.org/camachoc2000%40aol.com
>
_______________________________________________
>Albinism-talk mailing list
>Albinism-talk at nfbnet.org
>http://nfbnet.org/mailman/listinfo/albinism-talk_nfbnet.org
>To unsubscribe, change your list options or get your account info for Albinism-talk:
>http://nfbnet.org/mailman/options/albinism-talk_nfbnet.org/camachoc2000%40aol.com

-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/albinism-talk_nfbnet.org/attachments/20100706/6cd540fa/attachment.html>