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Want to hear how everyone is doing? Praying everyone is well and managing with lots of strength and determination. There isn’t a day that goes by where I don’t miss my husband. His service is this weekend. A month exactly from when he passed. 😩
I want to make sure that everyone hears me when I say “you got this” and don’t think that my husband’s story is an outcome for anyone who is fighting this battle. Yes, it happens but LC didn’t get him. He passed from complications Ie. Aspiration Pneumonia. I’m still shocked and completely heartbroken but I truly believe the advances with this disease are incredible. Keep fighting. Keep being positive. Keep the strength and know “you got this!” Sending so much love


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Hi Moonbeam,

So nice to hear from you given everything you’ve been through these last few weeks.  I think we were all shocked by your husband’s passing as we were gearing up to root for the next in line therapy.  I personally am so grateful you both had the courage to enroll in the clinical trial, we’ll all benefit from that going forward.  One of the things I realize every time I take my pills is someone was brave enough to take the risk, grateful isn’t adequate.  I read your posts to my husband along the way, when the time comes we’re willing to got the trial route to advance the science to benefit others since this disease is so random.  

I hope your husband’s service brings some comfort (without any family drama).  Know that that he is always with you and one day you will be gloriously reunited.   

We’ll always be here for you.  With love and hugs,


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Thanks for the nice wishes and you are in our thoughts and prayers as you go through this difficult time.  I wish you all the best going forward and thank you and your husband for participating in trials.


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