Our Family Conference this year had almost 45 families, and more than 150 people from across the country participate. If you could not make it, we have all the videos for you! Here is a quick roundup of all the talks with links to the videos.
We started the conference with an Introduction to SJIA talk by Dr. Jennifer Huggins. It was supposed to be in the newly diagnosed track but proved popular with SJIA old timers too!
Next the Founder & President of the SJIA Foundation, Rashmi Sinha discussed our mission, founding story and what we have accomplished in five years. Leah Bush from the SJIA Foundation gave an overview of the community, while Phil Reardon shared plans for how we hope to reach every SJIA family through newsletters, mailing lists & welcome packs.
Dr. Alexei Grom gave a brief overview of the recent history of SJIA trends & treatments including some disturbing new symptoms seen recently. Dr. Grant Schulert shared what they have learnt about lung complications in SJIA seen more and more in last 10 years. Next, our special guest Dr. Fabrizio DeBenedetti spoke about new treatment options for SJIA & MAS including options like IL-18 inhibitors, Jak-inhibitors and Emapalumab.
During the Expert Panel, parents had a chance to ask anything about SJIA & MAS of the experts on the stage.
After lunch, we had two special topics. Growth is an issue that many parents worry about, especially of kids who are on long-term steroids. Dr. Lee Denson spoke about impaired growth in Crohn’s Disease, and what they had learnt about the usage of growth hormones for such patients. Dr. Lara Danziger-Isakov took up a very relevant topic for SJIA patients – why its hard to deal with infections for patients who have inflammation and are also immunosuppressed.
Finally Dr Grom came back up to tell us about how the research samples collected during previous years of the Family Conference were used. It was great to hear how the community has helped support research.
Leave a Reply