SJIA Family Conference (Virtual Edition)

CONFERENCE GOALS

The goal of this meeting is to (a) educate parents and patients about the disease and current treatments and, (b) to accelerate therapies for these diseases, especially for cases refractory to current treatments.

We will be bringing together experts who research these areas, clinicians who treat such patients, regulators and patient families with the goal of encouraging robust discussion about patient experience, unmet needs, new therapies and clinical trials.

Two specific themes this year are:

• A global perspective on the disease (bringing together patients & physicians from many parts of the world)
• A lifespan perspective on the disease (bringing together both parents of children with SJIA and adults with SJIA / Still’s Disease)

PRELIMINARY SPEAKERS LIST

• Alexei Grom (Cincinnati Children’s Hospital, USA)
• A. V. Ramanan (University of Bristol, UK)
• Bas Vastert (UMC Utrecht, Netherlands)
• Celinia Poli (Universidad del Desarrollo, Chile)
• Christiaan Scott (University of Cape Town, South Africa)
• Fabrizio De Benedetti (Bambino Gesù, Italy)
• Grant Schulert (Cincinnati Children’s Hospital, USA)
• Jelena Vojinovic (University of Nis, Serbia)
• Nikolay Nikolov (FDA, USA)
• Petros Efthimiou (New York Rheumatology Care, USA)
• Richard Veselý (EMA, UK)
• Sathish Kumar (Christian Medical College, India)
• Scott Canna (University of Pittsburgh, USA)

CONFERENCE PROGRAM SUMMARY

REGISTRATION

• Patient Registration: Coming soon
• Physician / Researcher Registration: Coming soon
• Pharma Registration: Coming soon

EVENT LOGISTICS

• The conference will be organized via an online conferencing system where you can login, find links to sessions, interact with other attendees. The talks / panels themselves will be organized via Zoom. 

CONFERENCE SCHEDULE

Wed. Dec 2^nd: A Focus on Patient Education (8am –12pm EST)

• 8:00am – 8:10am Welcome
  • • • • Rashmi Sinha (SJIA Foundation)
• 8:10am – 8:20am A Lifetime with SJIA
  • • • • Nicole Dalton
• 8:20am – 8:40am Patient Panel: The Many Faces of Refractory SJIA
  • • • • Samantha Church, Daniel Armas, Leah Bush & Anna Carlson | moderated by Rashmi Sinha
• 8:40am – 9:05am Talk: What is SJIA & Strategies for Treatment
  • • • • Alexei Grom (Cincinnati Children’s Hospital)
• 9:05am – 9:30am Talk: What is Still’s Disease & Strategies for Treatment
  • • • • Petros Efthimiou (New York Rheumatology Care)
• 9:30am – 9:40am BREAK
• 9:40am – 10:05am Talk: MAS | Old and New Treatments
  • • • • Scott Canna (UPMC Children’s Hospital)
• 10:05am – 10:35am Panel Discussion: Treating Refractory SJIA & MAS
  • • • • Lauren Henderson (Boston Children’s Hospital),  Grant Schulert (Cincinnati Children’s Hospita) & All Speakers | moderated by Scott Canna
• 10:35am – 11:10am Talk & Panel Discussion: COVID-19 in SJIA & Other Rheumatic Patients
  • • • • Marco Gattorno (G. Gaslini Children Hospital) | All Speakers | moderated by Scott Canna
• 11:10am – 11:40am Open Question-Answer Session with Patients
  • • • • All Speakers | moderated by Rashmi Sinha
• 11:40am – 11:50am Closing Remarks

Thurs. Dec 3^rd: Unmet Needs & Drug Development in SJIA, Still’s & MAS (8am – 12pm EST)

• 8:00am – 8:10am Welcome – Rashmi Sinha
• 8:10am – 8:50am Panel: Global Perspectives on Treating SJIA
  • • • • Christiaan Scott (University of Cape Town), Sathish Kumar (Christian Medical College), Jelena Vojinovic (University of Nis) & Cecilia Poli (Universidad del Desarrollo) | moderated by A.V. Ramanan (University Hospitals Bristol)
• 8:50am – 9:20am Panel: Bridging the Gap Between SJIA & Still’s – Is It Time to View Them Together?
  • • • • Bella Mehta (Hospital for Special Surgery), Aleksander Lenert (University of Iowa), Bas Vastert (UMC Utrecht), Helen Leavis (UMC Utrecht) & Nicole Dalton | moderated by Michael Ombrello (NIAMS, NIH)
• 9:20am – 9:30am BREAK
• 9:30am – 11.40am Multi-Session Topic: Challenges in Drug Development for SJIA, Still’s & MAS –
  • • • • moderated by Alexei Grom (Cincinnati Children’s Hospital)
• 9:30am – 9:50am (i) Short Presentations: Investigator Initiated Trials
  • • • • Randy Cron (UAB), Bas Vastert (UMC Utrecht)
• 9:50am – 10:30am (ii) Short Presentations: Challenges & Need for Innovative Trial Designs –
  • • • • Fabrizio De Benedetti (Ospedale Pediatrico Bambino Gesù), A.V. Ramanan (University Hospitals Bristol) & Yuki Kimura (Hackensack Meridian Health)
• 10:30am – 11:00am (iii) Invited Comments from Patients & Pharma
  • • • • Pharma: Frank Waldron-Lynch (Novartis), Eduardo Schiffrin (AB2Bio), Ravi Rao / John Yee (Sobi)
        • Patients: Regina Minerva, Chelsea O’Donnell
• 11:00am – 11:40am iv) Panel Discussion with Representatives from FDA & EMA
  • • • • Nikolay Nikolov (FDA) & Richard Vesely (EMA)
• 11:40am – 11:50am Closing Remarks

Fri. Dec 4^th: Focus on SJIA-LD (8:30am – 12pm EST)

Multi-Session Topic: Towards better Understanding and Treatment Strategies for Lung Disease in SJIA

• 8:30am – 8:40am Welcome Rashmi Sinha
• 8:40am – 9:15am Some Interesting SJIA-LD Cases from Around the World | moderated by Rashmi Sinha
  • • • A few interesting cases: Alexei Grom (Cincinnati Children’s Hospital) – 10 mins
      • Some European Cases: Fabrizio De Benedetti (Ospedale Pediatrico Bambino Gesù) – 5 mins
      • Patients: Sheila Simon & TBD (5 mins)
      • Update about Cincinnati Cohort: Grant Schulert (Cincinnati Children’s Hospital) – 15 mins
• 9:15am – 10:15am Research Updates about SJIA-LD | moderated by Peter Nigrovic (Harvard Medical School)
  • • • Adriana Almeida de Jesus (NIAID, NIH) – 20 mins
      • Grant Schulert (Cincinnati Children’s Hospital) – 20 mins
      • Vivian Saper (Stanford University) – 20 mins
• 10:15am – 10:25am Break
• 10:25am – 11:00am Panel Discussion – What do we know about SJIA-LD?
  • • • Betsy Mellins (Stanford University), Michael Ombrello (NIAMS, NIH) & All Speakers | moderated by Peter Nigrovic (Harvard Medical School)
• 11:00am – 11:50am SJIA-LD Treatment Strategies – Patients & Clinicians Ask Questions Moderated by Rashmi Sinha, Anna Carlson & Regina Minerva
• 11:50am – 12:00pm Closing Remarks

Conference Organizer

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 & MAS 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.