I was introduced to Lisa Moreno-Dickinson through a mutual friend who found our passion to help children with rare diseases to be powerful. I had no idea how passionately powerful she was, let alone how she would be the driving force behind helping others who struggle with not only Blau Syndrome (CAID), but several other diseases.
Her son Brody is a beautiful 6 years old boy, born appropriately on National Rare Disease Day. It took 19 1/2 months, countless pediatricians and hospitals in over 4 states to come up with a diagnosis. Brody has Blau Syndrome (CAID) it is a chronic and progressive disease with a variable and often unpredictable spectrum of severity in cases with expanded manifestations, life expectancy may be reduced. Blau Syndrome is just one of at least 30 syndromes that fall into under the CAID (Childhood Auto Inflammatory Disease) umbrella.
Auto inflammatory disorders are characterized by intense episodes of inflammation that result in such symptoms as fever, rash, or joint swelling. Blau Syndrome can affect other parts of the body as well, in the the liver, kidney, brain, blood vessels, lungs and heart. Inflammation involving these organs and tissues can cause life-threatening complications.
Blau Syndrome is a life long disease that there is no cure for at this time. It is treated with steroids mainly. The side effects for both of these drugs can be suppression of growth to osteoporosis and require routine liver function tests. Methotrexate has also been determined to be somewhat effective and in Brody’s case he has reacted well to adult doses of a drug used off-label. The problem is the long term side effects, lack of safe treatment options and awareness for CAID.
Because of Brody, his mother Lisa Moreno-Dickinson has spent the last 6 years fighting to not only increase awareness, research and treatments but help find a cure. She started StopCAIDNow (www.stopcaidnow.org) in 2011. She is tireless in her mission and pursuit of a cure. Stop CAID Now is a 501c3 accredited non-profit and is recognized globally. Prior to StopCAIDNow there was little to no information on childhood auto inflammatory diseases that was easily accessible online. Today, Children’s Hospital of Philadelphia has a CAID/SAID support group. The Cleveland Clinic Children’s Hospital is working to fund and create the first national evaluation clinic for children with CAID. StopCAIDNow made a large donation to Cleveland Clinic Children’s Hospital for continuing medical education for physicians.
Because of Brody there is hope on the horizon, that children won’t have to live in pain, suffering all the time. Currently, there is a patented drug that is entering the FDA process that is non-toxic and shows incredible promise and not only for those diagnosed with CAID. Lisa Moreno-Dickinson has been instrumental in supporting the development of this drug. The fact is this drug has the potential to help people with Alzheimers, Epilespy, RA and so on.
Please support StopCAIDNow for the countless children that suffer in pain everyday. Help end CAID.