Help Sharon receive life-changing MS treatment
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Our good friend Sharon H. has been offered a spot in an exciting emerging study at St. Mikes for MS treatment called "PoNS" (Portable Neuromodulation Stimulator), which has been shown to improve MS symptoms, retraining the brain through a device held in your mouth during training sessions.
The good -- she got the last spot on a trial that she has been waiting for since 2016! For all of us who know and love Sharon, we know what a shit-kicking year this has been for her—surviving colon cancer in November and losing her cat companion of 18 1/2 years in September, so finally--GOOD NEWS!
The bad -- this medical device is not yet classified a medical device in Canada and costs a lot. A LOT. And.... the price goes up January 1, 2022. Which is why every share / like / email forward, etc. can help us spread the word and reach of this fundraiser!
(photos of Sharon at an exhibition of her photographs in 2001)
In Sharon's own words:
"I have been offered a new MS treatment; PoNs, through my Neurologist and the St Mike's MS Clinic. There were only 10 spots and I was given the last one the day I was going into surgery.
I first learned of PoNs (Neuro-modulating stimulation) on the Nature of Things in 2016. It's a device that sits on the tongue electrically stimulating it to fool the brain into neuroplasticity coupled with 14 weeks of intensive physiotherapy. My friend Ardra began the treatment in July and has seen mind blowing results. MS disease progression is gauged by walking speed. When she started it took 23 minutes to walk 0.59 kms at the end of November it took only 13 minutes! 10 minutes faster! And after 89 days she has been able to safely walk in her apartment for 20 minute periods without support of mobility devices!
As I turn 60 in 2022 I also begin a new chapter of strength and improved mobility and avoiding a wheelchair."
(photos of Sharon at an exhibition of her photographs in 2001)
In Sharon's own words:
"I have been offered a new MS treatment; PoNs, through my Neurologist and the St Mike's MS Clinic. There were only 10 spots and I was given the last one the day I was going into surgery.
I first learned of PoNs (Neuro-modulating stimulation) on the Nature of Things in 2016. It's a device that sits on the tongue electrically stimulating it to fool the brain into neuroplasticity coupled with 14 weeks of intensive physiotherapy. My friend Ardra began the treatment in July and has seen mind blowing results. MS disease progression is gauged by walking speed. When she started it took 23 minutes to walk 0.59 kms at the end of November it took only 13 minutes! 10 minutes faster! And after 89 days she has been able to safely walk in her apartment for 20 minute periods without support of mobility devices!
As I turn 60 in 2022 I also begin a new chapter of strength and improved mobility and avoiding a wheelchair."
So what is this treatment?
Here is the medical description:
PoNS™ (short for Portable Neuromodulation Stimulator) is an innovative, non-surgical medical device that gently stimulates the surface of the tongue, exciting the neural network flowing to the brain. This neural activity is believed to enable neuroplasticity – the ability of the brain to make adaptive changes related to the structure and function of the nervous system – which may restore lost function.
And here is a real-life description from Sharon's friend and kickass blogger Ardra of Tripping on Air , who recently completed the trial:
Tripping On Air - PoNS Treatment : https://trippingonair.com/2021/06/can-pons-treatment-make-my-ms-any-better.html
Tripping On Air - PoNS Review : https://trippingonair.com/2021/10/pons-review-good-bad-news-for-a-new-ms-treatment.html
And here is a real-life description from Sharon's friend and kickass blogger Ardra of Tripping on Air , who recently completed the trial:
Tripping On Air - PoNS Treatment : https://trippingonair.com/2021/06/can-pons-treatment-make-my-ms-any-better.html
Tripping On Air - PoNS Review : https://trippingonair.com/2021/10/pons-review-good-bad-news-for-a-new-ms-treatment.html
Let's help Sharon start this chapter now -- the devices & treatment are increasing in cost (See below for Robyn's number breakdown) at the end of the year. Every dollar we raise will go towards Sharon's treatment expenses (minus the 2.9% fees charged by GoFundMe), helping her increase independence and begin this new chapter of strength & improved mobility.
How much does this all cost?
Physiotherapy= $4,171
PoNS device with shipping and tax = $5,750
3 replacement mouthpieces and tax = $1,695
Plus extra 2.9%+ $0.30 to cover credit card fees (estimate $350) charged by GoFundMe) brings us to total cost of $11,966*
3 replacement mouthpieces and tax = $1,695
Plus extra 2.9%+ $0.30 to cover credit card fees (estimate $350) charged by GoFundMe) brings us to total cost of $11,966*
*I have accounted for donations received offline in our total requested amount.
If you'd prefer to donate offline, call or text Robyn for details: 519 718 8469
If you'd prefer to donate offline, call or text Robyn for details: 519 718 8469
We have until the end of the year to help Sharon start treatment at this cost. The increases are below.
The PoNS Device
On Dec 31, 2021 = $5,000
>> On Jan 1, 2022 = $10,000
The PoNS Mouthpiece (which is programmed to die at 90 days of use)
>> On Jan 1, 2022 = $10,000
The PoNS Mouthpiece (which is programmed to die at 90 days of use)
On Dec 31, 2021 = $500
>> On Jan 1, 2022 = $2,500 (Yep, that's a 500% increase)
So -- the faster we can help Sharon raise this money, the less it will cost. If she is not able to raise all needed funds, she will only have the device to use for the 14 week study. Still good, but covering a full year of costs would be better.
Please share widely, and support if you are able. Thank you!
>> On Jan 1, 2022 = $2,500 (Yep, that's a 500% increase)
So -- the faster we can help Sharon raise this money, the less it will cost. If she is not able to raise all needed funds, she will only have the device to use for the 14 week study. Still good, but covering a full year of costs would be better.
Please share widely, and support if you are able. Thank you!
A few background links & reading about PoNS:
The Nature of Things clip:
Organizer
Robyn York
Organizer
Toronto, ON