Tagged: Adults With SMA, Amazon Alexa, assistive technology, care package, Cure SMA, heat pads, support system, teens with SMA
- This topic has 15 replies, 5 voices, and was last updated 3 years, 6 months ago by
Kevin Schaefer.
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November 7, 2018 at 3:00 pm #15364
Kevin Schaefer
KeymasterCure SMA just launched a new support program for teens and adults with SMA. The first initiative with this project is a care package, which you can request here if you are a teen or adult with SMA: http://www.curesma.org/news/teen-adult-supportprogram.html.
Items in this care package include a heat pad, a telescopic back scratcher and an Amazon Echo Plus. I sent in a request for one of these packages this morning, and I’d encourage you all to do the same.
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November 7, 2018 at 3:09 pm #15366
DeAnn R
KeymasterThat’s pretty cool. I just submitted a request as well.
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November 8, 2018 at 10:53 am #15383
Kevin Schaefer
KeymasterCool. Yeah it’s a good initiative.
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November 7, 2018 at 11:44 pm #15368
Ryan Berhar
KeymasterI was hoping for a private jet, but this’ll do. Very cool.
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November 8, 2018 at 10:56 am #15384
Kevin Schaefer
KeymasterHaha.
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November 8, 2018 at 9:19 am #15380
Dennis Turner
ParticipantThank you for the heads up! I have requested this package, it looks great.
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November 8, 2018 at 10:56 am #15385
Kevin Schaefer
KeymasterNo prob!
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November 9, 2018 at 11:58 pm #15420
Chantell Venter
ParticipantLooks like a great package. Unfortunately only available in US. Nothing like this available in South Africa.
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November 10, 2018 at 7:17 pm #15423
DeAnn R
KeymasterI do wish offers like this could be world wide. Do you have any SMA type organizations in South Africa? If so, maybe you could nudge them into offering something like this to those who would benefit.
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November 18, 2018 at 12:52 pm #15582
Chantell Venter
ParticipantI am not aware of any Organizations in South Africa that would do something like this.
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November 18, 2018 at 2:02 pm #15583
Kevin Schaefer
KeymasterI wonder if you could contact Cure SMA to ask if there’s anything they could do. They’ll at least answer your questions if you ask about receiving a care package. We had several international folks attend the conference this summer.
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November 16, 2018 at 2:25 pm #15573
Kevin Schaefer
KeymasterHey everyone, my care package arrived yesterday. It’s great! I especially like the sheepskin cloth, which I’m going to use for my chair.
If you haven’t already requested one, I highly recommend you do.
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November 17, 2018 at 3:48 pm #15575
DeAnn R
KeymasterMine arrived too! My fave was the warming neck wrap. Already used it! Really everything was great, well thought out products.
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November 18, 2018 at 2:03 pm #15584
Kevin Schaefer
KeymasterThat’s great! The neck wrap is great.
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November 16, 2018 at 9:22 pm #15574
Ryan Berhar
KeymasterI requested it today.
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November 18, 2018 at 2:03 pm #15585
Kevin Schaefer
KeymasterNice man. I think you’ll find it really helpful.
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