[Albinism-talk] New here

Carmen Camacho camachoc2000 at aol.com
Tue Jul 6 05:51:28 CDT 2010 

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
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>>>>> info for Albinism-talk:
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>>>>
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>>>
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>
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