We are excited to announce that we are one of the recipients of the Rare As One grant from the Chan Zuckerberg Foundation. We will be part of the Rare as One network for the next 24 months, and benefit from both CZI experts and from learning from the other rare disease organizations in the network.
We wrote this grant along with Alexei Grom and Grant Schulert from Cincinnati Children’s Hospital, and look forward to working closely with them on the next phase of our organization’s work.
Our goal has always been to find effective treatments and ultimately a cure for refractory Systemic JIA (or Systemic Juvenile Idiopathic Arthritis). This grant gives us renewed vigor to reach that goal.
We are also announcing a new initiative from our foundation: Accelerating Therapies for Refractory SJIA. This project will weave together many of our efforts into one. But most importantly, we hope to extend our work beyond Cincinnati Children’s Hospital to a few other centers which treat refractory SJIA patients. We also plan to work with other organizations in the field. More details about the Accelerate project here.
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Thank you, research is needed. My daughter has been a warrior,fighting SJIA for 6 years. She is now 18 and still fighting. We pray that one day a definitive cure will be found.
I am 47, symptoms from birth, officially diagnosed at age 6 in 1979 and still fighting despite the odds. I’ve had many “close calls”, MAS progression, loss of eyesight, pleurisy, pericarditis, inflammation of all tissues, joint dislocation on a daily basis, seizures, etc. I was in a coma for a week when I was 20. I lost a lot of acquaintances growing up at Toronto Sick Kids in the 70s and 80s. I’m here to tell parents not to give up hope and keep fighting for your children but also remember even though they may be very sick and spend much time in the hospital, let them enjoy their childhood and encourage them every step of the way. We are still here and we’re still fighting.
Congrats to the SJIA foundation to be selected as the Rare as One recipient! This is such great news as we continue to fight for our SJIA warriors. Thank you for your commitment to finding therapies and treatments for this life threatening disease.