My Sister Has Stiff Person Syndrome

 
Raised: $6,135.00
Goal: $400,000.00
 
 
 

Created by

Sophia Kassem

368 Friends

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My older sister Laura has a rare disease called Stiff Person Syndrome (SPS). It affects only one in one million individuals, worldwide. This disease has caused painful spasms that have c... more

 
 
 
 
 
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Updated posted by Sophia Kassem 23 days ago

Here it is! The Ticket to Healing Palette, inspired by Laura and created by the extremely talented Jillian Jordan, is now live! All proceeds will benefit Laura's medical fund. Please share the link with your family and friends, and check out two other listings that are now up! You must register to bid. Bidding ends Friday. To see all products up for bid, click on this link: http://hyenacart.com/stores/SPSAFundraising/.

Auction Listings:
http://hyenacart.com/SPSAFundraising/mt/6174/54172/Ticket-to-Healing-Mineral-Eyeshadow-Palette--Neutral

http://hyenacart.com/SPSAFundraising/mt/6174/86248/Spring-Summer-Brights-Loose-Eyeshadow-Set

http://hyenacart.com/SPSAFundraising/mt/6174/93848/Paloma-Silver-Loose-Eyeshadow-Pigment

 

 
 

Updated posted by Sophia Kassem 1 month ago

Laura’s birthday is tomorrow! Let’s make sure Laura has a good birthday! Please make a donation to help Laura get closer to reaching her goal and having a better quality of life. Don’t forget to share this page with your friends. Let’s make this a memorable birthday for Laura in a good way!

 

 
 

Updated posted by Sophia Kassem 1 month ago

Happy Rare Disease Day! Please remember to keep Laura in your thoughts and prayers, and if you are able to, donate to help Laura be able to get the stem cell transplant that may save her life. Let's help Laura beat Stiff Person Syndrome!

 

 
 
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Created by Sophia Kassem on November 8, 2013

My older sister Laura has a rare disease called Stiff Person Syndrome (SPS). It affects only one in one million individuals, worldwide. This disease has caused painful spasms that have caused Laura to have falls causing injuries to her face and her back.  Her spasms have progressed in the last four months and can last for hours.  The spasms now affect her entire trunk and legs.  She has been bedridden since November 2013 and has difficulty breathing during the spasms affecting her trunk.  Laura has failed multiple treatments and only continues to get worse.  There is a potential cure for Laura, but it costs $400,000 and insurance will not cover it.  The potential cure is a stem cell transplant.  Before SPS, Laura was living her life.  She was working at the Social Security Administration and enjoyed baking and traveling.  Laura is a fighter and refuses to give up hope.  Let’s help Laura raise the money so that she can have the stem cell transplant.  Let’s help Laura beat this nasty disease and get her life back!  Please, please, please do what you can to help Laura.  I am begging you all to help my sister get back to the happy person you see in her pictures.


Click here if you want to read more about Laura’s story: 

http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/index.html?sr=sharebar_facebook

 
 
 
 
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Hi Laura. My name is Ron. I am 37 years old. 7 years ago I too was diagnosed with SPS. And like the other SPS victims doctors misdiagnosed me. They told me I was depressed or suffering from anxiety. One doctor called me a liar and threw me out of his office after explaining my symptoms. I receive IVIG every month at home. I also have the oral medications. The IVIG has helped enough to get me walking on my own and able to have some normalcy and quality of life. But it didn't happen over night. Without the infusions I probably would be back to the being stiff and feeling like someone was stabbing me 24 hours a day. I would like to be able to talk to you and maybe support each other through this. I was very excited to read that others are doing better after the procedure in Canada. I would like to learn more about it as well. This may be something for me to consider. Maybe we can find the others to help bring more awareness. More publicity could possibly lead to raising funds for treatment or possibly getting free treatment. I was able to get some free treatment at the University of Penn in Philadelphia in exchange for me allowing resident neurologists run tests and study me. Please contact me if you are interested in talking about this. Maybe we can help make a difference. Sincerely, Ron Svitak

posted by Ron Svitak 2 months ago

Thanks to all who donated. I don't know you all but I am grateful. And Judy, that is exactly how I was able to get diagnosed. I went to over 29 doctors and hospitals within a 2 year period and all they came up with was the hypothyroidism, idiopathic neuropathy, and near syncope. It wasn't until May 2009, after watching 20/20 that I knew what was really wrong with me, but I had to wait until July 2009 to see a new neurologist to order the correct blood test to diagnose me. Who knew this test cost over $3000, but we were finally on the right path and I started to feel better with the new treatment, but that only lasted so long as this condition is progressive. I believe there are those who are misdiagnosed too with such things as MS or myasthenia gravis because this condition is unknown and therefore underdiagnosed.

posted by Laura K 3 months ago

I cannot donate much but will add my prayers with the money. My niece is one of the rare cases of a person with this syndrome. She went through hell before being correctly diagnosed and still goes through so much. It was only after she and her mother saw a tv special about someone with this syndrome that they were able to connect the dots to my nieces' symptoms and request the neurologist do the test. Perhaps this illness is even more widespread than is believed because of all the misdiagnosed cases. Hypothyroidism seems to be a catalyst for the disease as well. It is very prevalent in our family, myself included as are four of my five children. More needs to be researched on this auto-immune condition and the ramifications.

posted by Judy Scholler 3 months ago

1 - 3 of 3 Comments
 

Recent Donations (108)

$6,135 raised by 108 people in 5 months.

$75.00

Sam Baar

3 days ago

 
 

Much love and support Laura! I know how much you need this and wish you the best in reaching your goal!

 

$10.00

Vicky Funderburk

4 days ago (Monthly Donation)

 
 

$50.00

Anonymous

7 days ago (Monthly Donation)

 

$115.00

Anonymous

9 days ago

 

$50.00

Anonymous

9 days ago

 

$50.00

Waleed Kharma

1 month ago

 
 

$10.00

Vicky Funderburk

1 month ago (Monthly Donation)

 
 

$10.00

Vicky Funderburk

1 month ago

 
 

STAY STRONG

 

$50.00

Anonymous

1 month ago (Monthly Donation)

 

$30.00

Judy Scholler

1 month ago

 
 

Happy Birthday ! We pray you will have many, many more birthdays and all of them free from symptoms.

 

1-10 of 108 donations

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