2021 - 2022
September
ExploreU
We presented at ExploreU at Huntington Bank Stadium from 1:00-4:00pm on Saturday, September 4th to share more about our chapter of NORD Students for Rare and our mission!
Trivia, Root Beer Floats, and Rare Diseases
The NORD Students for Rare chapter, the officer team, and our faculty advisors, were introduced all while enjoying root beer floats and answering trivia questions about the University of Minnesota and rare diseases! This event was at 6:30pm on September 20th in Bruinicks Hall 123.
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October
What's your Piece in the Rare Disease Puzzle?
On October 18th in Bruinicks Hall 123 at 6:30pm we heard from Erica Barnes, the administrator of the Minnesota Chloe Barnes Rare Disease Advocacy Council that is housed in the University of Minnesota's own medical school and one of our faculty advisors! During an open discussion about rare diseases, we heard an overview of rare diseases, explored the past, present, and future of the rare disease space, and learned about the numerous barriers to care that specifically affect the rare disease community.
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Learn more about Erica Barnes and her story at https://www.chloesfight.org/
November
A Physician's Perspective
We were joined by Dr. Ashish Gupta, a Pediatric Blood and Marrow Transplant Physician and an Assistant Professor in the Department of Pediatrics at the University of Minnesota Medical School, on November 15th at 6:30pm in Burton Hall 120 for a discussion about the clinical management of rare diseases, stem cell transplants, and gene therapy.
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December
The Poetry of Rare Diseases: A Patient's Perspective with Jacob Thompson
On Monday, December 6th we were joined by Jacob Thompson in the Mississippi Room of Coffman Memorial Union to hear his story about his journey with Fredrich's Ataxia and his message shared through spoken word poetry. The event was an incredible opportunity to hear a patient's perspective and connect with other students, researchers, and professionals in the rare disease community!
January
Rare Disease Jeopardy & Get to Know You
At this virtual event we spent time in break-out rooms socializing and learning more about our fellow NORD SFR members and then played Jeopardy with trivia questions about rare diseases, the history of rare diseases, and rare diseases in society and pop-culture. It was a great event to get the semester started and made us excited for future events!
February
Rare Disease Bioinformatics Research
On February 7th we were joined by Samad Qureshi, a University of Minnesota PhD student, for a presentation about his research project that explores the current role and vast potential of bioinformatics in the diagnosis and care of rare disease patients. It was a great event that left us inspired about the future of care in the rare disease community.
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Rare Disease Day 2022
On February 28th we celebrated Rare Disease Day by partnering with the Pre-Genetic Counseling Club to create care packages for rare disease families being treated at Gillette's Children's Hospital in Saint Paul Minnesota. The care packages included hand made cards and bracelets, gum, hot chocolate packets, coloring books, and various other fun items!
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March
On March 8th we were joined by Rae Blaylark, the founder of the Sickle Cell Foundation of Minnesota. Rae shared information about the pathophysiology and history of SCD, her personal experience of having a child with SCD, and her role in the Sickle Cell Foundation of Minnesota and more ways to get involved in advocacy!
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Sickle Cell Disease Discussion
April
On April 13th we heard from Dr. Robert Kriel and Dr. James Cloyd from the Center for Orphan Drug Research (CODR) and Angela Bowles from The Epilepsy Foundation. Epilepsy is an important symptom of many rare diseases, although it itself is not rare. We learned about the history and prevalence of epilepsy, various types of seizures and how to respond to respond to each, various treatment options, how epilepsy can affect people's lives, and more! Our knowledge about the subject allows us to work to destigmatize epilepsy and dispel common myths about the condition.
Seizure Training
Uplifting Athletes
On April 25th we were joined by Rob Long, the executive director of Uplifting Athletes. Uplifting Athletes is a nonprofit organization dedicated to empowering people to advocate for the Rare Disease Community through sports. It provides opportunities for college and professional athletes to use their platform to spotlight the Rare Disease Community while gaining valuable leadership experience and increasing awareness.
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May
Exam Prep & Pizza
We celebrated the end of a successful spring semester on May 2nd with a study session fueled by pizza to celebrate the end of a successful semester and help our members get through their final exams!
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