You are invited to the
Systemic JIA Family Conference
Organized by the
Systemic JIA Foundation & Rheumatology Department, Cincinnati Children’s Hospital
Friday 1st of June, 2018 | 8 AM to 4:30 PM.
Saturday 2nd of June, 2018 | 8.30 AM to 5.00 PM
Cincinnati Childrens Hospital,
3333 Burnet Avenue, Cincinnati, OH, 45229, USA
- Who Should Attend
- Tentative Schedule
- Video Presentation
- Conference Organizers
Who Should Attend
SJIA Families & Physicians who treat such patients.
(Final schedule will be released closer to the event time)
Day 1 : June 1st, Friday
SECOND OPINION CLINIC
Appointments need to be scheduled well in advance. Get in touch with organizers ASAP.
|8:00 AM – 12.00 PM||SJIA Clinic (for patients from out of town)|
MINI-SYMPOSIUM ON LUNG COMPLICATIONS IN SJIA
|1:00 PM – 2:30 PM||Parents Stories (of their kids with SJIA + ILD)|
|2:30 PM – 3:30 PM||Talk & Open Discussion: Overview of Lung complications in SJIA|
|3:30 PM – 3:45 PM||Break|
|3:45 PM – 5:00 PM||Talk & Open Discussion: Treatment options for SJIA + Lung patients|
Day 2 : June 2nd, Saturday
SJIA Family Day (for all SJIA Families)
|8.30 AM – 9.30 AM||Breakfast (& settling in kids in Children’s rooms)|
|9:30 AM – 10.00 AM||Parents Networking: Parents meet each other|
|10:00 AM – 10.15 AM||Welcome & Introduction|
|10:15 AM – 10:45 AM||Parents Panel: Issues & Concerns of SJIA parents|
|10:45 AM – 11:15 AM||Talk 1: SJIA Treatment paths|
|11:15 AM – 11:45 AM||Talk 2: SJIA and its complications (including MAS & lung complications)|
|11:45 AM – 1:15 PM||LUNCH (and group photos)|
|1:15 PM – 2.15 PM||Expert Panel: Parents ask questions of SJIA Physicians|
|2:15 PM – 3:00 PM||Roundtable 1 (break into small groups w/ patients & physicians)|
|3.00 PM – 3:45 PM||Roundtable 2 (break into small groups w/ patients & physicians)|
|3:45 PM – 4:30 PM||Parent Networking|
|4:30 PM – 5:00 PM||Event Wrap-up|
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.
I am interested in helping cure SJIA by participating in any relevant research studies. How can I find out about any relevant studies during SJIA Family Conference?
There are several research studies relevant to SJIA that will be open for participation during SJIA Family Conference. Participation will be open to both your child with SJIA, their siblings and parents. If you indicate your your interest in participation in the Attendance Details survey, someone will reach out to you with more information.
What about my children? Can I bring my child with SJIA and siblings to the event?
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.
I have teenagers (either my child with SJIA or their sibling). Will there be something for them to do?
Yes, we will put the children into age-appropriate groups and have specific activities for each. Additionally, there will be a talk about living with SJIA in the room for teenagers.
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. If you have any special needs from diet perspective, please bring food with you. Alternatively, the hospital cafe is right across the hallway from the Auditorium, and you can get something from there.
What about cost? Do I have to pay anything to attend?
We are working hard to keep this event free. If you appreciate our efforts in this domain, please consider making a donation to the Systemic JIA Foundation.
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 from Cincinnati Childrens. If you are registered for the event, then you should be able to avail of the discounts that they offer to their patients.
What about parking?
There is visitor parking available at Cincinnati Children’s. You can learn more here.
Organized by the Systemic JIA Foundation, a privately funded foundation. The foundation organizes conferences, conducts surveys, makes seed grants, working with researchers and parents to accelerate the search for a cure. The goal of this conference is to bring together families suffering from Systemic JIA so they can learn from each other and experts. Such a meeting also given an opportunity for researchers to learn more about the disease and its complications.
List of Registered Attendees
on April 25, 2018 at 1:27 am
on April 19, 2018 at 11:41 am
on April 16, 2018 at 9:02 am
on April 15, 2018 at 2:19 pm
on April 15, 2018 at 12:33 pm
on April 14, 2018 at 6:10 pm
on April 13, 2018 at 2:40 pm
Todd Callan Company: Aegis Therapies
on April 11, 2018 at 10:26 am
Scott Canna Company: Rheumatology, Children's Hospital of Pittsburg
on April 10, 2018 at 1:16 pm
Jason Woods Company: Cincinnati Children's Hospital Medical Center
on April 10, 2018 at 11:54 am
on April 10, 2018 at 9:32 am
Patricia Rogel Company: PR Orthotics & OT LLC
on April 9, 2018 at 10:26 am
Hermine Brunner Company: CCHMC
on April 9, 2018 at 8:57 am
on April 9, 2018 at 5:37 am
Dana Leonard Company: Centegra health system
on April 8, 2018 at 8:30 pm
on April 8, 2018 at 7:28 pm
on April 8, 2018 at 6:48 pm
on April 8, 2018 at 6:24 pm
on April 8, 2018 at 5:09 pm
on April 8, 2018 at 4:40 pm
on April 8, 2018 at 4:40 pm
on April 8, 2018 at 4:32 pm
on April 8, 2018 at 4:25 pm
on April 8, 2018 at 4:17 pm
on April 8, 2018 at 3:52 pm
Stephanie Sampson Company: University of Illinois College of Medicine at Peoria
on April 8, 2018 at 3:39 pm
on April 8, 2018 at 3:17 pm
on April 8, 2018 at 2:58 pm
on April 8, 2018 at 2:46 pm
on April 8, 2018 at 2:45 pm
on April 8, 2018 at 2:31 pm
on April 8, 2018 at 1:01 pm
on April 8, 2018 at 7:38 am
Leah Bush Company: Systemic JIA Foundation
on April 7, 2018 at 4:28 am
Rashmi Sinha Company: Systemic JIA Foundation