***** The shirts are on sale all the time even when I stop having campaign sales. Only 5 shirts have sold during my 1st 3 day campaign (5 if a weekend interrupt...s it) and since then nothing more. I haven't even seen any pictures. Please support SPS by spreading the message with 1 of these tops.
***Update - For those who made orders, please take a picture wearing your tops and tag me so I can see you in them if you can.
Please share and also help raise awareness with us fellow sufferers by buying a range of patriotic shirts as well as 1 new styled shirt that wasn't in the original black collection and have it available in time for SPS Awareness Day on March 15th this year if ordered within this 3 day campaign that began on 2/24/18. No tank tops are in this collection as it's not really in season yet. Liking this campaign is not enough to help. Please try to make a purchase too and note how shipping costs decline when you buy more. The campaign will automatically renew itself in another 3 days but even if there is no campaign, you may make an order at any time as SPS awareness is needed all the time and not just during the March 15th designated awareness day. So get your orders in as soon as you can. Prices range from $21-$45.99US even though you may order from other countries in euros, francs, etc. but shipping cannot be guaranteed by 3/15/18.
So please keep sharing and bumping up this post within your group as I can't watch every group myself. Your help is welcomed very much.
I really never got an answer about anniversary shirts but I think I found a way to make 1 that I like as well as another one that only lists the month and year on the back of the shirt. Using 2 sides though will be more expensive. I hope to release these designs on tops again and maybe even a mug soon. Life is short and I would rather try to sell from these collections now while I am still able.
Doctors may have given up on me labeling me as terminal here but I never gave up.... I'm still strong and able bodied. If the medical community won't help me, I will help myself. I'll build my own little gym with parallel bars. I want to stand and walk again. Bars don't require me to really need supervision. I have a bike, balance balls, therabands, etc. Those won't do the trick though. I'll even ask for a medical script for the bars to use as a tax deduction possibly depending how expensive the kind I can use in the house would be. I have to try this as not a single hospital physical therapy department nor PT group in town has this equipment. Even the Mayo Clinic didn't have them, which makes me wonder how do PT programs help surgical patients with orthopedic or spinal problems learn to walk again safely without such equipment. What people in the Toledo area don't get hip and/or knee replacements?
Should we have anniversary shirts made for SPS, as in just for the 5th year, 10th, 15th, etc.? I don't want to design shirts that are dated for each single year to make them wearable all the time but I'm amenable to adding a line about SPS Awareness Day on the back of shirts. I'd just have to see how much the add on would raise prices because now it's not just a one sided design or I keep it one sided but remove the logo at the bottom. I might just do that to keep costs down if the 2 sided thing doesn't work out. I'll never know unless I try them all.
Please donate if you can and the SPS clothing is also being sold with or without a campaign as awareness is needed desperately now all the time. Your help in donating and sharing with friends and family is so greatly appreciated.
Help raise awareness with us fellow sufferers by buying a range of shirts from 10 different styles of tank tops to sweatshirts and have it available in time for... SPS Awareness Day on March 15th this year.
Sorry I cannot reply to anyone in any group as someone reported this as spam to FB and I am now banned from interacting in groups until after 2/28 11:03PM. So please keep sharing and bumping up this post within your group.
Here is a perfect anthem for those of us made to feel invisible by family, friends, the basic human race and the medical community just because we have diseases that they can't understand: https://www.vevo.com/…/katy-pe…/roar-(official)/USUV71301934. Yes "Roar" because we do have a voice! Rare Disease Day is coming at the end of next month and SPS Awareness Day is on March 15, 2018.
Learn more about SPS by reading about what happened to me and by simply Googling stiff person... syndrome and reading from reputable medical sites and personal blogs. There's no other way to learn but the medical community just doesn't seem to want to learn with that computer right in front of them even though before the time of computers in each room or tablets, doctors carried PDAs and totally relied on them. Now they act as if there is no time to look up a word or two.
Today is free shipping day. This is not a fundraiser at all, but I'm here to tell you that Bravelets has a new limited edition mug available for sale again. No sales from this mug will provide donations to any causes. There is also a discounted $5 bracelet in many colors and a new cuff bracelet just barely in for the holidays. To order any of these items, please visit https://www.bravelets.com/…/1-in-a-million-not-1-of-a-milli…. Take advantage of the free shipping and buy the mugs or $5 bracelets pictured below. I'd even look into the signature bar bracelet set. Things are always in limited supply. Free shipping ends at 1am EST but I'm sure new sales will follow tomorrow and the following days.
*****Update: This is a new sale for Veterans Day. Free shipping is no longer available for all sales. However, once you have an order of $40, free shipping kicks in and there is also 20% off all items but the Rosa and Maya bracelets are no longer in stock. A great deal however is the leather stitched bracelet. Instead of getting the 3 set package for $80 in this sale, buy then in singles for $20 each, which is a great deal especially if you buy 2 to get free shipping. Again h...urry as sales are limited to inventory on hand.
Be Brave and raise awareness for a rare disease such as the one I suffer from now, which is called stiff person syndrome (SPS). This is not spam and is an actual cause. If you don't believe me, just google stiff person syndrome or even my name before reporting me as spam and getting me suspended for a week or 2 making it harder for me to spread awareness for this cause. It's an extremely rare disease and by supporting this sale, you are supporting awareness for SPS even if you don't say so as Bravelets etched motto can be used for any cause. I made this event so far as weekly since they had the same sale about 2 weeks ago but now there are more items on sale in addition to the free shipping. Get these great deals now before the items sell out and give them as gifts or something special for yourself. https://www.bravelets.com/…/1-in-a-million-not-1-of-a-milli….
** HALLOWEEN UPDATE: check back daily for surprise deals. Plus it appears as if shipping is still free. Maya and Rosa bracelets are still $8 each but other items get deeply discounted daily through 10/31. Just check out the link here daily for the next surprise. **
*I contacted the company today 10/23 and new designs and more choices will be available soon for the holiday season. The company just cut back after bei...ng hit hard by Hurricane Harvey. So you can follow my page or sign up with Bravelets even better to get sale alerts as I know there will be many but remember to use stiff person syndrome as your cause because we are such a real minority of a disease.*
I'm not fundraising for anything and as you can see from this site, I really can't gain anything except maintaining a presence on this site for SPS awareness. They have limited sale items until all is sold out such as the Rosa and Maya bracelets named for Rosa Parks and Maya Angelou that are selling for $8 separately or if you choose the set for $15 but colors are limited for both. There are other sale items but nothing that's a steal like these two. So get them today while shipping is free for US sales. Canada sales are welcome but I don't think the same rules apply with shipping. After today, shipping will likely apply again to purchases under $20 as it was this past week though I hadn't gotten around to letting you know as it's usually free after $100 in purchases. So grab them while you can and set aside for someone's birthday or even as a really early start to the holidays.
Stiff person syndrome still needs acknowledgement from everyone. So few people have ever heard of it and as a result this lack of knowledge may hurt you now or in the future as a patient. What your doctor might think may only be a thyroid issue, POTS or even fibromyalgia may actually be the beginning of SPS.
How will a doctor know, when someone like me already gets dismissed by friends and family and even other doctors? I've lost count of how many doctors I fired or them me b...ecause these doctors refuse to go on PubMed and just look up these 3 small words.
We might be a small percentage right now but there is no doubt many are misdiagnosed for something else. Help by doing something as simple as telling your doctor that you know of someone with SPS or saw it online and ask your doctor if he/she has ever heard of it or even seen a case before. Let's intrigue these doctors as we lost "House" to bring such enlightening cases to the small screen even if they were just fictionalized. Ask them about their stance on stem cell transplants for illnesses such as SPS, MS, scleraderma, and other autoimmune diseases too as we need more clinical trials and research for stem cell transplants known as HSCT for autoimmune diseases.
These transplants are being done in the US and Europe via trials and also in Europe, Africa, Asia and below the American border just as long as you can pay but who knows the standards in these facilities. It's not as if these facilities will be completely honest with you when you are desperate and able to get the payment that they are demanding to treat you. Therefore we need to inform all our doctors especially specialists such as neurologists, rheumatologists, hematologists, etc. about the expanded use of HSCT for MS and other autoimmune diseases beyond just cancers and other blood diseases treated by HSCT. It will take the layman to teach his doctor about treatments that should hopefully be commonplace within the next 10-20 years but hopefully sooner for those of us in need at this moment. This needs to be a worldwide effort. These diseases don't discriminate.
I only say all of this as a warning as I've noticed how people are removing my page from one's they have already liked but the fight has barely begun and we SPS patients still desperately need your help to acknowledge this disease and to get it acknowledged by anyone else you know especially in the media and medical communities.
This article features the lead investigator for the trial I have been seeking. I tried to move to this doctor in Seattle rather than deal with its branch in Denver but learned that Seattle's team had basically broken down with doctors moving to other locations. That was last year. Maybe this article is a sign that things are moving forward at a better pace with Seattle. I'd like to see more HSCT trial centers as all trial centers mentioned in the article are in the most expen...sive cities in America. I'd rather go to Seattle because it utilizes the large medical campus at the Univ. of Washington. Unlike Seattle, Denver relies on private hospitals and the oncology dept. for the hospital used in the trial is very small. So cancer patients have priority over trial patients no matter how bad off the trial patient may be. This really needs to be expanded to centers known to have large oncology wards along with neurologists in the same hospital center. In Denver I went to one hospital for basically everything and then about 15 miles away to another hospital center to see the neurologist on 3 different days during my 2 visits to Denver. Now that doesn't make sense at all. http://www.the-rheumatologist.org/…/hsct-severe-autoimmune…/
I haven't posted in a long time but this might help some of you. For those interested this is what I found about 1 alternative treatment. Black (cumin) seed in Islamic medicine is said to cure everything but death. I take the oil which I call motor oil because of the taste. You need to eat or drink something heavy after it or use some mouthwash. I also use it externally on my body (massage). I also take the gel caps when I can't deal with the oil anymore. I've always bought b...oth from Piping Rock. This hasn't happened in a few years but the oil is down to a little over $15 per 16oz bottle. We will definitely be buying a lot as the sale ends 8/26 days. The gel caps are cheapest right now in the 2 bottle package of 120 softgels per bottle of 350mg pills at $18.99 and that's basically the regular price Look around and you will see these are the best deals. To get $5 to $10 off your first purchase use this link: http://www.pipingrock.com/?rwcode=AAW579. You can get many other health items at crazy prices on this site other than black seed oil products too. I do use the seeds too on my savory foods but they are way more expensive to keep buying from the Middle Eastern markets for daily use but I have my in from family sending it off with friends from Egypt too.
Please sign and then share this petition with others to sign as well. Thanks for all your help.
Today only. Flash sale $10 unisex stitched leather bracelets compared to regular price of $36 with free shipping on sales over $20. This price has never been this low!
I just got notice of a flash sale that ends at midnight CST tonight for $5 friendship bracelets, rather than $26 each, plus free US shipping on sales of $20 or more for Mother's Day. I've never seen prices this low, so take advantage and no code is needed to get this deal.
Awhile back someone asked me if Bravelets made charms. Well now they do in letters, numbers, words and certain shapes. There is also free express 2 day shipping through 5/6 for purchases over $100 for US purchases only.
Additional proposal requests for HSCT trials for SPS and more around the US. Please share with any doctor interested in doing research. Do NOT share with current ongoing trial centers for this.
Would any doctors who friended me or other doctors be willing to submit a study request to the National Cancer Institute, NIH, or FDA to look into stem cell tra...nsplants using the myleoablative method for stiff person syndrome and other neuroimmunological diseases using with patients having at least a minimum DLCO of 40% to qualify?
There are not enough trial sites in the US in economical places or even in locations more suitable for more candidates. Chicago and Seattle are extremely expensive and Seattle and Denver are more out of the way cities. It would be nice to have more Midwest cities in places such as PA or even the New England area. I'm sure a study near California and Florida would be nice too. It would be easier to get people into trials if there were better locations.
Oncologists would be very instrumental in leading such a study along with neurologists. Cardiologists and pulmonologists will also be needed on each team as well as Physical and Rehabilitation specialists during the recovery phase.
If anyone is interested, please message me. I do have a protocol for SPS that could be used as a sample for a proposal.
Thanks for those interested in helping getting more trials out there and helping patients such as me.
For those considering HSCT in Chicago, please read this first and know Dr. Burt has several warning letters on the FDA website actually: https://ipscell.com/…/fda-warns-northwesterns-richard-burt…/. This is why I refused to go to a level 1 trial center while many still flocked to Dr. Burt. We are human beings, not guinea pigs.