Meetings & Events

Day 3 Recap



Registration Hours

  • Saturday, April 13 6:45 am - 6:00 pm

Day 3: At a Glance

 

The third day of the 2019 CARRA Annual Scientific Meeting was a very full day. Patients, family members, and caregivers met to discuss how to engage other families in CARRA's work while CARRA members of various disease and reseasrch committees attended workgroups in morning and afternoon sessions.

The General Session began at 8:00 am, and attendees enjoyed a discussion about PROMIS presented by Jim Witter and PROs presented by Bryce Reeve.

The Oral Abstracts were presented at 5:30, and topics ranged from depression screening to patient-reported outcomes.

 

Click here to see the Google Photo Gallery from Day 3!


Parent Feature: Alyse Tankanow & Lindsey Bernier

Alyse Tankanow of Ann Arbor, MI (pictured on the right) and Lindsey Bernier of Frederick, MD (pictured on the left) met each other for the first time at this CARRA meeting!

Alyse was invited by Dr. Grant Schulert. Her son Henry will turn 4 on May 13, and has been on colchicine for a year and a half. He started having fevers and joint pain at age 2, which lasted for over 9 months. He currently has an "unspecified autoinflammatory disease," but Alyse noted that he has had a "complete change in lifestyle. He's more active and more happy."

Lindsey was invited by Dr. Fatma Dedeoglu. Her daughter Olivia will be 7 on Sunday (April 14). At age three and a half, she went from being a completely healthy kid to having high fevers and vomiting overnight. The Bernier family worked with multiple providers and struggled through being told "it's a virus" repeatedly, and have been at Boston Children's Hospital for a year and a half. Olivia has been on colchicine and anakinra for a year and a half. Lindsey said Olivia still experiences migraines, stomach, and joint fatigue, but Olivia "went from non functioning to functioning. She doesn't have days where she can no longer move, but every day is a struggle."

Alyse is really excited to be here, learning and contributing to research. She said it's been great to share everyone's stories, and know "you're not the only one going through it. I am really grateful to all of the other parents attending and to the physicians for their compassion."

Lindsey says that even though 6:45 is "just too early," the opportunity to attend the meeting has been "validation that you're not crazy. It's rewarding to be able to see the progression. It's optimistic. The tools are there -- not today, not tomorrow, but in the future."


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