As we ramp up foundation plans, we added a Parents Advisory Board to better harness the strength of the SJIA community. All the members of the Parents Board (listed below) …
- Have broad and deep experience with SJIA / MAS, experience with biologics.
- Appreciate the importance of research and try to stay abreast of new findings.
- Have some understanding of the ecosystem around rare diseases: the role of researchers, Pharma and FDA.
- Are devoted to SJIA and committed to helping other parents, researchers.
Leah Bush’s journey as a parent advocate began in 2009 when her daughter Azilee was diagnosed with a perinatal stroke & epilepsy. At that time online support groups for patients and parents were almost nonexistent, so when her son, Ezra, was diagnosed with SJIA in 2012 she understood the need for support for parents of children diagnosed with SJIA.
Shortly after her son’s diagnosis, Leah co-founded the Facebook-based Systemic JIA parents group and has been a vital part of its growth. The group now has more than 600 members and serves as an important community hub for parents to support and learn from one another.
Most recently Leah started the public awareness campaign, CureSJIA, which promotes advocacy and shares information about research, clinical trials, and living with Systemic JIA. The accompanying hashtag, #CureSJIA, has been adopted across social media by parents and patients sharing their journey with SJIA. Leah believes that patients living with rare diseases can play an important role in finding new treatments as they are the experts on their disease. In her work with the SJIA foundation, she hopes to facilitate community outreach, promote the importance of Patient and Family-centered care, and design needed resources to help parents and patients become empowered e-patients.
Leah lives with her husband and three children in Rosman, NC.
Luciana Peixoto is a chemical engineer, with experience in the chemical and pharmaceutical industries. She is passionate about science, and rare diseases. She currently lives in Brazil but has lived in North America and Europe for 11 years.
Her experience with complex pediatric diseases started with her son’s diagnosis with Type 1 Diabetes in 2000. She was next flung into the world of rare diseases in 2013 when her daughter was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) and Macrophage Activation Syndrome (MAS), while they were living in Switzerland. They struggled for years to control SJIA & MAS with mostly off-label drugs and also tried to get experimental drugs via compassionate use. But the disease progressed and her daughter developed life-threatening complications. In 2018, her daughter did a Bone Marrow Transplant (BMT) which ultimately led to disease remission.
Through this journey, Luciana was inspired by passionate parents working with dedicated physicians and scientists to find therapies for rare diseases. She joined the SJIA Foundation to work in these areas. Given her own experience with searching for therapies for her child, she has a special interest in helping other SJIA parents find treatments whether through clinical trials, compassionate use, or treatments like BMT.
She also helps the SJIA foundation with building up patient connections in Europe and South America. Additionally, she is working on analytical projects with large databases to understand the incidence of SJIA in USA.
Kari is passionate about helping patients become their own advocates. In the past 12 years of dealing with a child with a rare disease, she has learned about how to work within the medical system to find a diagnosis and treatment. From making her way to NIH, to researching and finding a clinical trial that could help her child, Kari believes that rare disease patients need to be proactive and find options on their own if conventional treatments are not working.
Kari is also passionate about about Paying it forward and being the change that she would like the world to be. In the past two years, she has used the hashtag #Raeganswish to raise thousands of dollars for various causes. In doing so, she has worked with Writer/Comedian/Actor, Ricky Smith. Together they have inspired thousands of people to also join the movement R.A.K.E (Random Acts of Kindness Everywhere) . Her work has been covered local news media outlets, www.RAKENOW.org and on the hashtags #Raeganswish and #RAKE on Facebook, Instagram and Twitter.
Kari is a graduate of West Virginia University. She is a former surgical technologist with Charlotte Eye, Ear, Nose & Throat Associates, specializing in Ophthalmology. She resides in Charlotte, NC with her husband Paul, and two daughters, Raegan and Avery.
In working with the foundation, Kari is committed to bringing that same energy and passion to helping the SJIA community find more treatments and ultimately a cure.