These shatterproof gold star ornaments are ready to ship out to all our 2014 supporters that donated at least $25 this year. But if you make a donation right away, we can get you one for the holidays. They have a custom logo in burgundy red that says “Shine On! You’re One in a Million” on them. One in a Million is the odds of having a spontaneous genetic mutation that can cause a number of autoinflammatory diseases, and is also our way to recognize the amazing and unique supporters of the Autoinflammatory Alliance.
We have a limited supply, but there are some extras available to send to anyone that wants to make a suggested donation of at least $6.00 per ornament for US orders, or a minimum of $10.00 per ornament for Canada or other international orders. This minimum donation will cover our out-of-pocket costs for production, packaging and shipping, so if you are able to donate a bit more, it would be greatly appreciated and support our efforts.
Please donate through this paypal link below, and specify in the message how many your are ordering, and also if there are additional addresses to ship them to if you are ordering more than one ornament as a gift. If you have any questions, please email us at karen@autoinflammatory.org. Paypal is the best way to donate and we can process your request quickly, especially for international orders. We will start shipping these ornaments out by December 19th.
A special thanks to all our donors and everyone that has been involved this year with our organization. From donating funds, time, services or doing fundraising, and more, you all have been amazing. Shine on! Thank you.
Caroling for Cures is our community based annual holiday fundraiser. Are you part of a choir, or you just enjoy caroling during the holidays? Then we invite you to start your own Caroling for Cures donation drive. Donated funds will help to support awareness and research for autoinflammatory diseases, and are tax deductible in the U.S.
How Caroling for Cures Works
To start your own Caroling for Cures donation drive is simple. While out caroling or singing with your choir, bring a jar and ask for donations of small change. To help bring awareness to your cause and about what fever syndromes/autoinflammatory diseases are you can:
This link has some great ideas for doing Holiday Carol-grams or prearranged caroling opportunities for a set donation rate.
If singing out in the cold is not for you, make a video of your family caroling or playing music from home to share with family and friends:
Helpful Links With Free Sheet Music to Use for Caroling
Christmas Carol Lyrics This site just has the lyrics, but if you know the tune already, this site has all the words. Since some are copyrighted as sheet music, having just the lyrics online is allowed to be free on this site.
ChristmasCarolMusic.org If you are looking for sheet music for traditional carols, this site is good.
itunes Christmas Carol Music and lyrics app Yes, there is an app for that! And it’s free! If everyone has a digital gadget, they can download an app with the music to use while caroling.
You can also find nice books with Christmas music in them that can be used from year to year. Here are a few examples:
We also would love to see your videos of Caroling for Cures and how you used the giving season to help raise awareness for autoinflammatory diseases. Send us the link to your YouTube video by emailing us at karen@autoinflammatory.org or post it to the Autoinflammatory Alliance Facebook page here.
Autoinflammatory Alliance
P.O. Box 590354
San Francisco, CA 94159
We look forward to hearing from our community how Caroling for Cures for autoinflammatory diseases made a difference this holiday season!
Juvenile arthritis is not “just arthritis,” the same way a brain tumor is not “just a headache” or a torn ligament is not “just a sprain.”
Osteoarthritis (which most people get if they live long enough) happens when cartilage in the joints wears away from a lifetime of use. THIS is your grandmother’s arthritis.
A preteen with fluid on the heart and lungs. A preschooler losing their sight from eye inflammation. A toddler with knees the size of grapefruits. An elementary school student with osteopenia and stunted growth from long-term steroid use. A teen with permanent, untreatable damage in the feet. THIS is juvenile arthritis.
JA patients get injections of a chemotherapy drug, take dozens of pills every week, know which vein is the best for starting an IV or drawing blood, and have more specialists than teachers. They deal with ignorant, thoughtless comments from people who don’t believe their diagnosis. They have to decide whether to be a normal kid or be pain-free. They have to ration their energy. They have wheelchairs. They know the hours the pharmacy is open. They are surprised that their friends don’t take medicine every morning, and many need to take injections of medicines that are painful a few times a week, or even daily. They wake up stiff and in pain more often than not. They can feel oncoming weather changes in their bones. They can’t go away from home overnight without packing half a dozen different medicines.
These kids are some of the bravest and strongest people you will ever meet, and on a good day, you wouldn’t even know they are sick. They don’t want sympathy. They just want to be normal, but they have to learn a new definition of normal. Their siblings become like nurses, and their parents get a medical education.
Jeri’s son Will celebrating his sister Carmen’s quinceanera. Jeri says Carmen is a big part of Will’s team that helps him cope and fight JA.
Jeri Téllez is mom to a child with an autoinflammatory type of arthritis known as systemic onset juvenile idiopathic arthritis (SoJIA), also called Still’s disease. SoJIA/Still’s is just one type of arthritis that can start in childhood. Other forms of juvenile arthritis have an autoimmune cause. All juvenile arthritis types share some similarities in how they can severely affect the children who live with these diseases. These are systemic diseases–They are not just arthritis. Many other autoinflammatory diseases also have some form of arthritis and are systemic diseases. Some symptoms mentioned in this article related to SoJIA or JA can also be seen in some other autoinflammatory diseases, including other syndromes involving macrophage activation, NOMID/CINCA, and a few others.
These shatterproof gold star ornaments are ready to ship out to all our 2014 supporters that donated at least $25 this year. But if you make a donation right away, we can get you one for the holidays. They have a custom logo in burgundy red that says “Shine On! You’re One in a Million” on them. One in a Million is the odds of having a spontaneous genetic mutation that can cause a number of autoinflammatory diseases, and is also our way to recognize the amazing and unique supporters of the Autoinflammatory Alliance. 
Wear festive clothing, hats
