I have 4 major causes that I support. My first is the Arthritis Foundation. They don't yet know what causes RA, or any of the other diseases that my baby lives with. There is no registry in place that would help to regulate care, or uncover harmful side effects of the medications used. The Arthritis Foundation is helping to fund a registry. They also help to fund special camps for children that are fighting these crazy diseases. These camps are staffed with medical professionals that can draw bloodwork, & perform injections among other things. These camps allow these children a week to be just a kid, with other kids that are suffering from the same diseases. Some of these children have never met another child with the same conditions. The AF also sponsors in part the Juvenile Arthritis Conference. This event teaches families about the diseases, the medications, disability issues, and helps families to connect with each other. The Arthritis Foundation does a lot of good. Please help us to support them better and help fund more research and camps for children. (Also, there are very few paid staff members. The majority of donations go to the cause- not the payroll.)
The next is Cure JM. Since JM only affect 2-4 children out of a million, it is very rare and doesn't get the attention that it deserves. One family that had an affected child decided that they weren't going to settle. They want a cure, and if no one else was willing to find one, they would try. This family has sought out volunteers from all over the country, raising 2.5 million since 2003. (It is ALL volunteer led.) They have a registry going, they have had Dr. Lauren Pachman working tirelessly on researching for a cure. They helped Dr. Pachman & Dr. Lisa Rider to write a book, even collaborating with Cure JM members on the book! And they have fought for awareness!
The last is The International AutoImmune Arthritis Movement. This non-profit is brand new, and also volunteer run. This group was started after one woman developed Rheumatoid Arthritis. At first she was thrilled to learn what she had- at least now she had a reason for feeling horrible! However, that quickly turned to frustration because few people understand that two Aleve isn't going to take away this pain. It isn't in just one place- it's all over, making you feel as though you have the flu, like your bones are all broken, and like you are walking on broken glass. I have had CHILDREN say that their broken arms paled in comparison to the pain of arthritis. This group stives to bring to arthritis the proper attention that it deserves, making it known that ARTHRITIS IS AN AUTOIMMUNE DISEASE! AUTOIMMUNE DISEASES ARE A RESULT OF THE BODY ATTACKING ITSELF! (See if your 2 Aleve will fix that. Go ahead...)
The last is Make A Wish foundation. Even before Emily got sick, I would give to them when I could because they truly are a miracle. I never expected to ever have to actually use them, but here we are at that bump in the road now. Just the idea that we qualify is so sad, yet so heartwarming to know that they are there to make my little baby as happy as possible, creating life-long memories. We all know where the donations go- right to the kids.
If you are able to give financially, please choose a non-profit. If not, please help to make people more aware of the arthritis umbrella, or volunteer your time. Thank you for reading my blogs! That alone helps with the awareness aspect! :)
