SJIA Family Conference 2019

Organized by:

Systemic JIA Foundation

&

Department of Rheumatology, Cincinnati Children’s Hospital

Schedule – Download as PDF

JUNE 27th, THURSDAY (PRE-CONFERENCE)

• Morning: Zoo Visit with SJIA Families (Cincinnati Zoo)
• All Day: Second Opinion Appointments (Rheum Clinic, CCHMC) / Research Participation (Location T, CCHMC)

JUNE 28th, FRIDAY (PRE-CONFERENCE)

• All Day: Second Opinion Appointments (Rheum Clinic, CCHMC) / Research Participation (Location T, CCHMC)
• Afternoon: Group Discussion (for families with diagnosed ILD / PAP. By invitation only.) (CCHMC)
• Afternoon: Conf Registration & Parent Networking (Hampton Inn)
• Evening: Welcome Reception (Hampton Inn)

JUNE 29th, SATURDAY (MAIN CONFERENCE DAY)

• Morning: Research Participation (Location T, CCHMC)
• All Day: Family Conference Program (Sabin Auditorium, CCHMC)

Saturday Conference Program

• 8.45 am   – 9.15 am:   Introduction to SJIA (special talk for first time conference attendees) (Speaker: TBD)

• 9.15 am   – 9.30 am:   BREAKFAST

• 9.30 am   – 9.50 am:   SJIA Foundation: mission & accomplishments: Rashmi Sinha (+ Phil Reardon: How foundation helps patients + Leah: Community Highlights)

• 9.50 am   – 9.55 am:   Setting stage for next two talks (Dr. Alexei Grom)

• 9.55 am   – 10.25 am:  New drugs for SJIA / MAS (Dr. Fabrizio DeBenedetti)

• 10.25 am – 10.40 am  COFFEE BREAK

• 10.40 am – 11.10 pm:  What we know about lung disease in SJIA (Dr. Grant Schulert)

• 11.10 am – 11.50 pm:  Ask Anything about SJIA / MAS (Expert Panel of docs on stage)

• 11.50 pm – 1.00 pm :   LUNCH

• 1.00 pm   – 1.20 pm :  Patient driven research (how samples from previous SJIA family conference were used): (Dr. Alexei Grom)

• 1.20 pm   – 1.40 pm:   Special topic: Impaired growth and how to treat: Lessons from Crohns Disease: (Dr. Lee Denson)

• 1.40 pm   – 2.00 pm:   Special topic: How to treat Infections in context of Inflammation & Immunosuppression: (Dr. Lara Danziger Isakov)

• 2.00 pm   – 2.10 pm:   Coffee Break

• 2.10 pm   – 2.55 pm:   Round table Group 1 (patients & docs discuss topics of interest)

• 2.55 pm   – 3.40 pm:   Round table Group 2 (patients & docs discuss topics of interest)

• 3.40 pm  –  3.50 pm:   Conference Wrap-up (& meet the Parents Conference Committee)

Registration

General Registration: https://form.jotform.com/sjia_foundation/general-registration

Family Registration: https://www.jotform.com/sjia_foundation/family-reg2019

Accommodations

There are many hotel options within Cincinnati or nearby suburbs. The official conference hotel is the Hampton Inn & Suites, Cincinnati Uptown University Area, which is very close to the Childrens’s Hospital. 

Book by May 31st to take advantage of the conference rates of $119/night (which includes free breakfast & wifi). Hotel has a heated pool as well.

We plan to hold some social events at the hotel 

Click this link to book hotel at conference rates.

Event FAQ

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. Patient families come from all over USA. We welcome families from other countries though we understand its a long trip.

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 Registration Form, 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?
For Saturday, the 29th which is the main program, 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. There will be vegetarian and meat options. 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 can book a room at the official conference hotel (See information about Hampton Inn & Suites, Uptown above). Also, there are many other hotels in Cincinnati and nearby suburbs which (here is a list of local hotels from Cincinnati Childrens). 

What about conference parking?
There is visitor parking available at Cincinnati Children’s. You can learn more here.

Conference Organizers

Organized by the Systemic JIA Foundation, 501(c)(3) non profit organization devoted to Systemic JIA. 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 & Stills Disease 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.

Parents Planning Committee

The conference is organized jointly with Cincinnati Childrens. SJIA Foundation sets up a SJIA Parents committee to organize the conference. For 2019 conference, the parents committee includes

Leah Bush

Kari Cupp

Katlin Reardon

Phil Reardon

Anna Carlson

Rachel Landers

Alex Spears

Chelsea O’Donnell

Rashmi Sinha