Past Events
Looking Back
Autoimmune Encephalitis and Rare Diseases in Entertainment
March 26, 2021
In this meeting, MSJ SFR and MSJ Neuroscience teamed up to review and discuss Brain on Fire, to follow up on our last movie event. We discussed autoimmune encephalitis as well as rare disease representation in media and entertainment. We also had a guest speaker, Mrs. Castillou, who shared her experience with having a family member with encephalitis.
Brain on Fire Movie Night
March 19, 2021
In collaboration with Neuroscience, MSJ SFR hosted a movie screening where our members got to watch Brain on Fire, a film starring Chloe Grace Moretz, that sheds light on the rare condition, autoimmune encephalitis, in which the body destroys healthy cells of the brain.
Rare Disease Day Career Panel
February 26, 2021
Our Rare Disease Day Career Panel was a success! Thank you to all of our speakers and attendees for making this panel insightful and enjoyable! Here is a recording of the event for those of you who missed it!
Speakers:
Dr. Marie-Francoise Chesselet, Director of the Integrative Center for Neural Repair and former researcher at UCLA
Yimy Villa, Marketing Communications Manager and at the California Institute for Regenerative Medicine who also conducted research during schooling Kimberly Nye, President of the TESS Research Foundation and Mother
Stacie Reveles, Advocacy and Programs Associate for the Cystic Fibrosis Research Institute and Mother
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Snow Globe Fundraiser
December 2020
Throughout the month of December, MSJ SFR held a snow globe fundraiser in order to raise money for the Ig A Nephropathy treatment. The snow globes were hand made and distributed by club officers.
Thanksgiving Card Drive
November 2020
To celebrate the holiday season, MSJ SFR decided to hold a card drive to give thanks to our healthcare workers and our local fire department. In a zoom meeting, members created cards with festive drawings and heartfelt messages thanking the first responders for their countless efforts to keep our community safe. Cards were dropped off at Kaiser Permanente, the Fremont Fire Department, and the Fremont Police Department.
Speaker Event: Dr. Sharon Hesterlee
October 23, 2020
To couple our first meeting Dr. Sharon Hesterlee, Chief Research Officer of the Muscular Dystrophy Association, held an interactive presentation detailing the specifics of Duchenne Muscular Dystrophy. Her lecture was followed by a Q&A session where students were able to connect with the speaker.
First Meeting 2021
October 9, 2010
MSJ Students for Rare diseases started the year off with an introductory meeting detailing the basics of our club as well as an engaging presentation on Duchenne Muscular Dystrophy.
Rare Disease Symposium 2020
September 18, 2020
This was a three hour event held on September 18th, 2020 where 30 students got to hear from a panel of 9 rare disease speakers. Panelists included specialists, scientists, rare disease foundations, patients, and doctors who all spoke about their career paths and experiences. The panel was held as a collaborative Q&A session, where students were also given the chance to ask questions. Speakers touched upon many issues such as lack of rare disease representation in the medical field and the need for better patient care.
COVID-19 Mask Drive
May 2020
COVID-19 has taken a toll on everybody. One group that is definitely being hit hard with the cases are hospitals. MSJ SFR decided to take steps to help our local hospital as they fight the Corona Virus. We coordinated a mask drive, reaching out to the rest of the student body for help. With the help of generous students, we were able to donate a total of 50 hand-made masks to Kaiser Permanente Fremont, where they will be given to doctors, nurses, staff, and patients.
Rare Disease Awareness Week Prizes
June 2020
From June 8th to June 12th MSJ SFR hosted its own awareness week through Facebook. Here, we prompted our community with questions pertaining to the general subject of rare diseases. We also asked questions based on the club itself, and why they feel that it is beneficial to be part of SFR. Along with this we added a fun aspect to this week- a raffle! Whenever our members interacted with our posts, they would earn points. Prizes included NORD merchandise and even  free boba from a store of their choice.
2020 Rare Disease Day
March 12, 2020
On March 12, 2020, MSJ SFR hosted a rare disease day event with guest speaker Jane Nicholson from Global Genes! She spoke about how to advocate for rare diseases and the importance of doing so. During this event, students were prompted to think about they they joined the rare disease community and how they wish to impact it. Fun activities were also sprinkled in to get students interested in learning about the facts and figures of rare disease patient populations.