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Thu Nov 02, 2017 11:45 pm

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Age: 28
Location: Portland, OR

Hey everybody! I thought I would post a little update about how the conference went last weekend.

This past weekend I was able to attend the Eye Am Not Alone Conference. This is a once a year gathering put on by the Ocular Melanoma Foundation for patients and caregivers to gather and offer each other support and helpful resources.

This was my first time attending and I must say that I had an amazing experience. I got a lot of really helpful feedback on my patches, and people really seemed to respond well to them. I didn't really sell a lot- but I went into it expecting to learn a lot and just be present, meet people, and hear people's stories, and for all of that it was a huge success.

My favorite thing about the event was just seeing people come together from all different backgrounds to help each other. For example, one woman was nervous because she was due for an enucleation soon, but she connected with another woman who had already gone through it, who answered her questions and offered contact information to keep in touch for support. It was a lot like what I see on here regularly, except in person with a lot of hugs.

The event had information about research, clinical trials, self care, Q&As with doctors, and all kinds of information that may be helpful for those touched by OM. I was not able to sit in on many of these talks because I was in charge of my little table the whole time, but it was cool to see so much information available in one place. One thing I noted was that people came from all over the country (and a few from around the world). The rarity of Ocular Melanoma, unfortunately, meant that a common thread for many of the people I met and talked to was that they do not have access to this much help and information where they live. It was very nice to see people getting the resources they have been looking for.

I feel very lucky to have been included in such a beautiful event, and will continue to help the Ocular Melanoma Foundation as much as I can. Hopefully, I'll be able to attend next year as well. I feel very inspired and energized!

Here's a pic of me at my little table:
Image

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*I make eye patches for a living, but I will not sell to you unless you PM me. I'm here to learn and support. :)



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Fri Nov 03, 2017 12:26 pm

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Joined: Mon Jan 05, 2015 3:10 pm
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Sounds great, what a wonderful conference to be able to attend and meet people who have/had OM, like me...thanks for the update....Lil

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_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Mon Nov 06, 2017 10:04 pm

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Joined: Tue Dec 27, 2016 7:30 pm
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Age: 28
Location: Portland, OR

It really was a special event. :) Maybe next year I'll see you there!

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*I make eye patches for a living, but I will not sell to you unless you PM me. I'm here to learn and support. :)



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Mon Nov 06, 2017 10:15 pm

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I wish, BTW love your pic with your patches, too...do you make any that slip over or on eyeglass lens? I'm the type that doesn't like a patch with elastic around my head, it messes up my hair lol...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Thu Nov 23, 2017 1:56 am

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Joined: Tue Dec 27, 2016 7:30 pm
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Age: 28
Location: Portland, OR

Sorry for the late reply Lil, I have been super distracted. Anyhoo, we don't make any that slip on to glasses, but maybe someday. I don't use elastic either. The bands close with velcro and I've been working on a new one that closes with a hook and is adjustable- neither of those are what you are asking about though and might still mess up your hair.

Have you tried patch pals? http://www.patchpals.com/?gclid=EAIaIQo ... gIyvfD_BwE

It seems like they specialize in the ones that go on your glasses.

_________________
*I make eye patches for a living, but I will not sell to you unless you PM me. I'm here to learn and support. :)



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Thu Nov 23, 2017 2:23 am

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Sarah, I like the way your eye patches look so much better than the ones on the website you sent me...it's very rare that I need an eye patch and velcro or adjustable hooks sound cool...I usually take my prosthetic out before I go to the ocularist, so I was thinking an eye patch would be good and a velcro or hook closure is a good idea, I'll think about it.. thank you for getting back to me, Sarah...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Wed Nov 29, 2017 7:27 pm

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Joined: Tue Dec 27, 2016 7:30 pm
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Age: 28
Location: Portland, OR

Thank you Lil, that's such a nice compliment. I'm always happy to help! I thought of another eye patch maker that is doing cool things as well that is worth checking out- he goes by sweet eye patches and has developed a bandless eye patch. It's held on with a special adhesive tape. Here's his website- http://www.sweeteyepatches.com/

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*I make eye patches for a living, but I will not sell to you unless you PM me. I'm here to learn and support. :)



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Wed Nov 29, 2017 9:12 pm

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Thanks Sarah for more info...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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