Meetings & Events

Day 4 Recap

Day 4: At a Glance

The last day of the 2019 CARRA Annual Scientific Meeting was productive and fun! CARRA members had their last day of workgroup sessions, and The General Session was "The State of Pain Research" presented by Gary Walco. Patients, family members, and caregivers discussed the website and registry newsletter.

 

The CARRA Dinner was held on Saturday night. During dinner, awards were presented for CARRA abstracts as well as recognition for CARRA service. After dinner, attendees enjoyed various tabletop and large scale party games! Giant Jenga was pretty popular, and medical attendees also enjoyed Giant Operation!

Click here to see the Google Photo gallery from Day 4!


Family Feature: The Tiffany Family

Kendal Tiffany is 22 years old, and attending her first CARRA meeting with her parents Vickie and Doug. The family traveled from St. Augustine, Florida, at the invitation of Dr. Susan Kim.

Kendal was diagnosed at age ten with JDM by Dr. Tolaymate, a pediatric nephrologist. The family has also worked with Dr. Lisa Rider and Dr. Lauren Pachman to treat her calcinosis.

Kendal was put on prednisone for a year and five months at age ten. She then shifted to methatrexate for seven months, and has been in remission since age twelve. She had a flare up of calcinosis in high school, and received 18 months of IVIG, but had to stop due to insurance not covering the treatment anymore. Thankfully however, the treatments worked. Her calcinosis used to hurt, be angry and inflamed, but she can now function normally. She took the MCAT last Saturday, is currently working as a medical assistant to get clinical hours, and has been accepted to an accelerated nursing program at the University of Florida. She wants to be a doctor or nurse practitioner, and work with patients and maybe even conduct her own research. There is a CARRA Registry site in Gainesville which she has connected with at the meeting to discuss how she can work with them.

The whole family is grateful for this experience. "Being invited to participate and share our opinions means so much," Vickie said. "We all know that things could be much worse." Doug has also enjoyed himself, saying that "the food has been amazing." Kendal hopes that by participating in research herself, that "the next child doesn't have to go through what I went through. It's awesome, definitely informative, and I've learned more about other diseases."


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