to SJIA Family Education Day at Cincinnati Children’s
22nd July 2017
9:00 AM to 4:30 AM
Sabin Auditorium, Cincinnati Childrens Hospital
3333 Burnet Avenue, Cincinnati, OH, 45229, USA
Organized jointly by the SJIA Foundation and Cincinnati Children’s Rheumatology Department
The event is for SJIA parents to learn about SJIA & MAS directly from experts and to connect with other SJIA families. It is also an opportunity for physicians (both Attending and Fellows) to meet SJIA families outside the clinic and hear about their concerns and questions.
We welcome patients with Adult Still’s Disease, or adults diagnosed with SJIA during childhood. We also welcome families with Autoinflammatory disease patients who will find this event relevant.
The event is FREE due to the generosity of our sponsors.
Conference Schedule & Reception
|8.00 am – 9.00 am||Breakfast & settling in kids in Children’s room|
|9:00 am – 9.15 am||Welcome & Introduction (Jon Boutelle, SJIA Foundation; Dr. Hermine Brunner, Cincinnati Rheumatology Dept)|
|9:15 am – 9.45 am||Parents Panel: Issues & Concerns of SJIA parents (Rashmi Sinha moderator, Kari Cupp, Katie Chevrier, Amanda Hendrix)|
|9:45 am – 10:10 am||What is SJIA: how is it different? – Dr. Hermine Brunner|
|10:10 am – 10:35 am||Treating New & Refractory SJIA Patients – Dr. Jennifer Huggins|
|10:35 am – 10:50 am||COFFEE BREAK|
|10:50 am – 11:15 am||How to recognize and treat MAS – Dr. Alexei Grom|
|11:15 am – 11:40 am||Research Updates for SJIA & MAS – Dr. Grant Schulert|
|11:40 am – 12.05 am||Current clinical trials in SJIA & MAS – Dr. Daniel Lovell|
|12:15 pm – 1.15 pm||LUNCH & NETWORKING|
|1:15 pm – 1:30 pm||Special Presentation (with kids in the room)|
|1:30 pm – 2:30 pm||Expert Panel: Parents can ask questions of SJIA Experts|
|2.30 pm – 3:30 pm||Roundtable Discussions (small groups on topics like MAS / Lung disease in SJIA / Growth Issues / Arthritis / Multiple Diagnosis)|
|3:30 pm – 4:00 pm||Parent Tips: 5 Minute talks by parents (Leah Bush, Phil Reardon, Kari Cupp & Jon Boutelle)|
|4:00 pm – 4:15 pm||Event Wrap-up|
Register for the conference (you can cancel later if you need to)
Video & Presentation
|Speaker||Presentation Title||Video Link||Presentation Link|
|Dr. Hermine Brunner||What is SJIA and how is it different than other diseases?||Video||Presentation|
|Dr. Esi Morgan||Leading Quality Improvements in Pediatric Rheumatology Care||N/A||Presentation|
|Dr. Daniel Lovell||Current Clinical Trials in SJIA & MAS||Video||Presentation|
|Dr. Grant Schulert||Research Updates in SJIA & MAS||Video||Presentation|
|Dr. Alexei Grom||Macrophage Activation Syndrome in SJIA||Video||Presentation|
|Dr. Jennifer Huggins||Treating new and refractory SJIA patients||Video||Presentation|
|Parent Panel||Parents Panel Issues & Concerns of SJIA parents||Video||N/A|
|Doctor Panel||SJIA Experts Answer Parent's Questions||Video||N/A|
My child has SJIA. Should I come to this event?
Yes, this event is for anyone whose child has a diagnosis of SJIA. You don’t need to be a patient of Cincinnati Children’s. We know of patient families coming from as far as Colorado, Atlanta and North Carolina.
I am a physician who sees SJIA Patients. Should I come to this event?
We welcome physicians (both Attending & Fellows) who look after SJIA patients to attend this event. The physicians from Cincinnati Children’s will be there and we welcome other physicians. Please register below so we know you will be there.
My child does not have SJIA, but another Autoinflammatory disease. Can I come to this event?
While the talks and discussions at this event are geared towards SJIA, some of the content does apply to other Autoinflammatory diseases. You are welcome to come by if you have a child with a related autoinflammatory disease.
What about my children? Can I bring them?
Yes, you can bring your child with SJIA and any other children. We will have a separate room for children. Child Life will be helping with activities to entertain the children. The kids will join us for lunch in the main room, but otherwise can be in the kids room.
What about meals? Will there be food?
Yes, we will have light breakfast, lunch and some snacks in the afternoon, in both main and children’s rooms. The food will be things like sandwiches, salads, pasta, baked goods etc. The hospital cafe is right across the hallway from the Auditorium, so if you / your child have any special diets that we cannot accommodate, you can grab something from the cafe.
What about cost? Do I have to pay anything to attend?
This event is free due to the generosity of our sponsors. There is no cost to attend.
I am coming from out of town and will need to stay overnight. What about accommodation?
You will need to arrange for your own accommodation. Here is a list of local hotels.
What about parking?
There is visitor parking available at Cincinnati Children’s. It should be less crowded since the event is on a Saturday. You can learn more here.
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