Monday, June 22, 2015

Please Share and Support

Multiple sclerosis awareness
Image by Donnee Spencer

I don't often talk about my family here. Now that I do a search, I find that I told some stories of when they moved four years ago and a story involving niece and eldest nephew (A.K.A. ArcherGirl and HapkidoKid). (I have four nephews in total: eldest, middle, and the twins.)

Oh, and I also show off the stuff I knit for them. Like last Christmas. Or for Heather's birthday last year. (So, I guess I do talk about them, albeit in a roundabout way.)

Well, the reason that I bring this up today is for a cause. Heather, my sister-in-law, was diagnosed with Multiple Sclerosis in April 2012. She has an aggressive form of MS, and she needs help for her best treatment option. She's joined us today.

Hello, Heather
Hello to you, Liz!
To fund this treatment, Heather has a GoFundMe. But, Heather, you didn't start this yourself, did you? Who started it and why?
Actually, an acquaintance started the fundraising for me. Her name is Lori and I have gotten to know her a bit through my kids' archery practices and tournaments. She is a very kind lady that felt she could do this small thing to help me and my family. 
 This is not the first treatment you'll undergo. What were you doing this past Christmas?
On December 19, 2014, I began a treatment at UCLA Medical Center. I received eleven, eight hour chemotherapy treatments. It was equivalent to about nine months of chemo, compressed, in order to kill off my immune system. After that, I received stem cell therapy, as part of a clinical trial. 
I found out about a month ago that while the clinical trial is considering me a "success", I only received minimal benefits. In order to see more, long-term, improvement; I need more stem cells.
So, to get more stem cells, you need another treatment. Where do you have to go for this one?
The most affordable option that I have right now is the Panama University Hospital in Panama City, Panama. They are working in partnership with Johns Hopkins University Hospital to give people with Progressive Multiple Sclerosis, the stem cell therapy that is my best option; but not yet FDA approved in the United States. 
Why hasn't the FDA approved it?
Sadly, due to misinformation, our country denies permission and funding for stem cell therapies; even though other countries have proven the effectiveness. 
I saw a bit of your travails on getting a passport on Facebook. Did you get your passport? What exactly happened there?
I was able to get all the forms approved and sent off, but it takes 2-3 weeks for processing. I've never had a passport before, and I had no idea how difficult it would be! Not due to the procedure, per se, mostly because the other 50 people applying 1) didn't fill out the forms properly, or 2) didn't bring the proper documents, or 3) didn't read the instructions. Then, they want to argue about their mistake and really solidify your belief that most people are really stupid. 
We all wish you well. Now, where can we go to help you out with all of this?
Here is the link to the GoFundMe page: http://www.gofundme.com/vr6sq2t
Please consider sharing on your social media pages! Thank you for taking the time to help me. 
Thanks for taking the time, Heather. Let us know how it goes.

And thank you for stopping by. I hope you can help, even if just by sharing this for your followers. Thanks.

50 comments:

  1. MS is horrible. Your sister-in-law sounds so strong and brave. I had done research on stem cell therapies a long time ago and there is a lot of misinformation about it. I wish that things would change so people like Heather can get the treatment they need and potentially get better. This is a wonderful cause. Thank you both for sharing it with us! I wish Heather all the best.

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  2. I wish they'd approve the treatment in the U.S. What a shame that people have to leave our country to get the treatment they need.

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    1. I know. Thanks for your support.

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    2. My husband and I feel the same! I wish it could be done locally.

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  3. Prayers she can go! Figures the FDA would say no. They say there is a cure for everything out there, but most of it isn't allowed in our country.
    Had to laugh at the part about stupid people...

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    1. Stupid people are the bane of my existence and a source of laughter at the same time. I appreciate your prayers.

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  4. I have a friend with MS. It's a terrible thing to deal with. I wish Heather all the best!

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  5. As a nurse I have taken care of people with MS. A horrible disease for sure. I wish only the best for Heather! Thanks for sharing her GoFundMe link!

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  6. That sounds unimaginably tough. I always disliked the stance on stem cells and this just burns me up even more. I just tweeted the link. I hope she gets funded.

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  7. Lori sounds like a lovely friend! I hope you manage to raise the funds :)
    Popping by on the A to Z Road Trip
    Debbie
    www.myrandommusings.blogspot.com

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    1. She is quite a lovely person. Thanks.

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  8. I shared this on my FB page :)

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  9. The short-sidedness of the FDA never ceases to amaze me. I could easily go off on a tangent, but I won’t. Instead I will tweet the GoFundMe page and send every bit of positive energy I can muster in Heather’s direction.

    VR Barkowski

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    1. I do appreciate your help in getting the word out!

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  10. My sister has MS but it is not aggressive. I hope you will be able to get to Panama sooner than later

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  11. Your poor sister in law. It is a shame with treatment here in the US for multiple sclerosis. We are supposed to be such an advanced country for medicine and health, yet fail in such key issues like this.

    betty

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    1. I know. It's deplorable.

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    2. It is exceedingly frustrating. I appreciate your kind words.

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  12. Shared on Twitter. My best wishes to your sister-in-law x

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  13. Shared on Google+. I learned quite a bit of new information from your interview. My heart goes out to Heather. ♥

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    1. Thank you for sharing and for your kind wishes!

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  14. Liz -- Wishing the best for your sister-in-law! What a difficult situation.

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  15. Oh, WOW! I know MS is a bad disease. I shall definitely being praying for your SIL's treatments and for greater benefits this go around. I'll definitely tweet the news. Thanks for sharing!

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  16. I support stem cell research and therapy....as long as it doesn't come from aborted babies. Adult stem cells have been proven to do the same things. They can be donated as a gift. As much as I feel for Heather, I would have to know what type of stem cell therapy a non regulated country like Panama was using before I could champion her cause.

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    1. There are no stem cells currently used that come from abortions. Stem cells come from umbilical cord blood and tissue that is recovered and donated after birth. The stem cells recovered from adults are derived from fat cells and are not the right type to treat me. I appreciate your concerns, but many people mistakenly think that these types of therapies are derived from abortions, and that is why our nation's medical treatments are so far behind other Western Nations.

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  17. Such a very sad story. I just spent way to much time reading about progressive ms and stem cell treatment, etc. Then feeling so very lucky that I only have relapsing - remitting ms and that insurance pays all but $40 of the $5165 charged each month for the drug I take every 12 hours to slow the progression...I actually have no idea what they pay for the 3 other drugs I take so that I can function, move, think clearly... I donated a bit... I'd share to Facebook except we so hit up everyone for the MS walk a month or so ago,, Sending thoughts of strength and healing to Heather.

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    1. Thank you for your donation. I truly appreciate it.

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  18. I'm so sorry to hear about Heather. I went to her FundMe page, and it was the fact that the doctor's feeling optimistic that she might lose the ability to speak in 3-5 years that really got me. The fact that 3-5 years could somehow be something to be optimistic about -- that really drove the reality of MS home for me.
    I made a donation, it's only small but I hope it will help a little and I'll tweet the link out. My thoughts are with your family Liz, and with Heather.

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    1. Thank you. Every little bit helps.

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    2. Thank you from the bottom of my heart.

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  19. Too young, too awful. My niece-in-law has developed an aggressive form of MS as well. I'll head over to the FundMe page.

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  20. Just awful. I will be sharing on twitter momentarily. Glad I was prompted here before I go to your recent post. Not sure how ... maybe fate.

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    1. Thanks. I think it helps that this has become my most popular post.

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