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Old 02-20-2007, 05:39 PM #1
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Cool Miracle?

Most of you know my history. I was diagnosed with a very rare form of familial amyloidosis in 1996. There's no treatment or cure because there are so few of us worldwide, and I'm at the bottom of the list when it comes to research. It took many years for me to accept this fate.

I saw an article recently about some scientists at Scripps working on the gelsolin protein, the amyloid protein causing the damage/dysfunction in my type. I wrote them a thank you note just to let them know they weren't just playing around with cells in a dish - there was a funny looking lady in Chicago cheering them on.

I got a reply, and I'm blown away because it sounds VERY promising. To me this is a miracle because I was NOWHERE on the radar for scientific research. I'm a little torn though, because I've seen some disastrous initial human trials. If they'll require heart and kidney biopsies, it could prove fatal. I've never been much of a gambler. Geesh, I thought gambling with money was hard, lol.

Here's what he had to say:

Dear Kathy;

Thank you for your thoughtful note. We have reason to believe that Fibrillex, a neurochem Inc (Canadian company) drug that is about to be approved by the FDA, may offer some relief to gelsolin amyloidosis patients like yourself. I would encourage you to have your physician call me about this possibility XXX-XXX-XXXX and I can explain the highly technical reasons why we think this could ameliorate your disease. This drug appears to be quite safe.

We need patient samples to better understand this disease and if you would be willing to help us through your local physician that could be terrific. Is there a patient organization for gelsolin amyloidosis patients in the US ?

Regarding your son, I am not a genetics expert. What I do know is we and others are trying to develop therapies for these diseases and we are starting to be successful. If he is a mutation carrier, knowing what to look for and treating the disease early in its course will be critical tp have the best chance at successful treatment.

We are currently testing several strategies against gelsolin amyloid disease in a mouse model of this disease we just developed, Hopefully we will learn enough to help your son in the future in the unfortunate event that he is a carrier.

With best regards

Jeff Kelly
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Old 02-20-2007, 05:42 PM #2
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thank you for posting this. you know so many of us have you in our prayers. i hope this is the answer...or the road to one.
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Old 02-20-2007, 06:26 PM #3
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I am thrilled at the possibility KathyM....sending you all the positive thoughts and prayers I can muster.
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Old 02-20-2007, 07:56 PM #4
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Wow! I can see your conundrum, Kathy. I know it must have you thinking really hard right now. I have an undiagnosed condition which it's beginning to seem is quite rare, and I'm not sure what I'd do if they wanted me to go through that. But whatever you decide, I hope that it does turn out to be a true miracle and it helps you ever so much!

Sincerely,
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Old 02-20-2007, 08:36 PM #5
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That sounds great Kathy, we will keep you in our prayers.
God works all things for the good of those who love him.
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Old 02-20-2007, 08:49 PM #6
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(((((((Kathy)))))))))

oh my friend how I hope and pray this could be the breakthrough for you

I will pray for you to have great wisdom and guidance as you proceed to investigate this

You give so much of yourself....I pray this will be something special coming back to you
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Old 02-21-2007, 01:16 AM #7
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Wow, Kathy.
That's the most amazing letter! Your post here has brought tears to my eyes. All the very best to you with this. Please let us know if you do more or hear more.
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Old 02-21-2007, 02:12 AM #8
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Thumbs up Way to go!!!!

Kathy,

That sounds wonderful. Seeing you have such good news, keeps the rest of us with hope. You are in my prayers.

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Old 02-21-2007, 10:37 AM #9
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Thanks ((everyone))

I also want to thank ALL my friends at Braintalk for the prayers and comfort you've given me over the years. I believe your love and support over the years have not only kept me strong, but kept me alive.

At one time I was suicidal. I still have occasional thoughts, but I always tell myself to hold on and give it one more day. Regardless of the outcome of this, I'm really glad I decided to hold out a little longer.

This all happened because I was teasing my Aussie friend Ellen in my amyloid support group for posting so much medical literature. She responded and posted a link to the research being done at The Kelly Group. I'll never get pissy with her again.
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Old 02-21-2007, 11:53 PM #10
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Kathy,

I just replied to your post at Brain Talk. I had to admit there and here that I haven't been on line that much and have just got out of the habit of checking in. So what do I find? Amazing news. A tough decision yes, but still.

You are in my prayers as you have been a lot lately, so I will just remember to prayer for you for wisdom regarding this possible treatment!

Love to you my friend,
Judy
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