Laura was able to meet 2 other people with Stiff Person Syndrome on Saturday! Laura met the first person with SPS who had a stem cell transplant in the U.S. I had a chance to meet him in July in Denver where he received the transplant. He is doing very well and doing things that he was not able to do several months ago, like walking around, driving, and traveling! Fortunately, his insurance covered the stem cell transplant, but Laura's insurance will not cover it. We are hopeful that Laura can have the stem cell transplant and will have the same results!
Laura had a cardiac catheterization today and started plasmapheresis at the Cleveland Clinic. She was allergic to the antibiotic that she was given and developed a rash. The plasmapheresis went well and she will have another course of plasmapheresis on Tuesday, Wednesday, and Friday. Fingers crossed that this treatment helps!
The eye shadow auction by the talented Jillian Jordan in March was a huge success, and she is back with a Summer Brights Loose Eyeshadow Set! Here is your chance to snag a set of five loose mineral shadows. Proceeds benefit Laura’s stem cell transplant fund. Laura has Stiff Person Syndrome and is in desperate need of a stem cell transplant to reverse the progression of this horrible disease which has stolen her life. If you are unable to bid (and even if you are), please share with your family and friends.
Many people have been asking me how Laura has been doing, so here is an update. She has remained bedridden since November. She continues to have multiple painful spasms during which she has difficulty breathing. Since November, Laura has only been out of the house two times. The first was last month when we took her to see a new neurologist at University Hospitals in Cleveland. Laura handled the trip like a champ, but unfortunately the trip was a waste of time. The neurologist had such a poor bedside manner and claimed to know about Stiff Person Syndrome, but in reality knew very little and was not able to offer anything of value to my sister. This week, we took Laura to Cleveland again to see a new neurologist at Cleveland Clinic. Again, Laura handled the trip like a champ. The new neurologist was great! He smiled and was compassionate and understanding. He has had about six other patients with Stiff Person Syndrome. He made adjustments to Laura’s medication regimen and discussed beginning plasmapheresis. Plasmapheresis is a process in which blood is taken out of the body. Plasma is then removed from the blood by a cell separator. After plasma separation, the blood cells are returned to the body, while the plasma, which contains the antibodies, is first treated to remove the antibodies and then returned to the body. We are hopeful that the medication adjustments and plasmapheresis will improve Laura’s condition and that she will be able to walk again which is a condition of her receiving the stem cell transplant.
Laura wants to thank everyone who has been asking about her and sending good thoughts and prayers her way. Laura is able to remain strong and fight against this nasty disease with your love and support.
With your generosity and support, over $6,000 has been raised so far! The clinical trial for the stem cell transplant is still going on. Can we reach $7,000 by the end of the month?!?! Lets's go Team Laura!!!
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!
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!
I want to thank an amazing and beautiful (inside and out) woman, Alma Villarreal, for creating the Stiff Person Syndrome Awareness Ribbon. Alma and her husband Benny spent hours making these ribbons to raise awareness for this beast of a disease. They have kindly and generously donated these ribbons to me to use for Laura's fundraising efforts. I cannot thank Alma and Benny enough for thinking about my sister. I will be selling the ribbons for $5 each plus $1 for shipping. Please send me a message if you would like to order a ribbon. And don't forget to get your wristbands as well!
I am selling wristbands to raise money to put toward Laura's stem cell transplant fund and also to raise Stiff Person Syndrome awareness. The wristbands are lime green and say "Stiff Person Syndrome" on one side and "One in a Million" on the other side in blue text. "www.gofundme.com/FundforLaura" is debossed on the inside of the wristbands.
I am also selling wristbands that say "Stiff Person Syndrome" on one side and "www.gofundme.com/FundforLaura" on the other side. The color combinations are blue wristband/lime green text, gray wristband/red text, red wristband/gray text, black wristband/hot pink text, and hot pink wristband/black text.
I am selling each wristband for $5.00. If you are interested, please email me the number of wristbands you want, which color combinations you want, and your address. I will email you back my address to send payment plus $1.00 shipping to, and will send your wristbands out as soon as I receive your payment. Thanks!
These are some pictures of Laura while she was in the hospital. She is currently at home because being at home is more comfortable for her than being in the hospital. We have not heard yet from OSU about a neuro bed being open.
Thank you to those who have been supportive, especially over the last few days, and to those who have shared my "gofundme" link. Laura has been accepted for transfer to the Ohio State University Wexner Medical Center. We are just waiting for a bed to open up in the neuro unit. Hopefully the doctors here will be able to do something that will help her, but a stem cell transplant is ultimately the end goal. Please keep praying for Laura, donating, and sharing the link! Thank you again!
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:
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