Category Archives: Conferences

Rare Disease Day USA

Alone we are Rare. Together we are Strong.

 Next Monday, February 28, is Rare Disease Day.  I think it’s a great project to be involved with because raising awareness of rare disorders is so important and by working together with multiple organizations we can work towards increased recognition and awareness of the many rare disorders (some even rarer than Moebius!) that NORD serves.

A project of Rare Disease Day is Wear That You Care/Jeans for Genes… basically wearing jeans in support of more awareness of genes!  Something great that you can do even if you can’t attend another event or fundraiser.  There is also a video project collecting stories of people with rare disorders and their families.

Speaking of awareness and education, I’ll be attending the Genetic Diseases of Children Conference on a scholarship awarded to families and people effected by genetic disorders.  There are a bunch of interesting panels and presentations.  Rick Guidotti, who will be the 2012 Closing Speaker for the Moebius Syndrome Conference, will be presenting.  I’ll definitely post anything I learn that I think would be valuable to the Moebius syndrome community.

Last weekend at the Moebius Syndrome conference, someone raised the question about why there aren’t many Moebius Syndrome-related blogs. Since I seem to be a glutton for punishment, I thought I’d try to start one. Mainly for myself, to express the myriad of thoughts living with Moebius Syndrome raises, but also for anyone else who might come across it.

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I’ve been home from the Conference for a day and am beyond exhausted. It’s that strange sort of emotional drain that I can only surmise comes from feeling too much, too strongly – we go through our day to day lives certainly effected by Moebius but not completely consumed by it. Changing that around come Conference-time is always kind of discombobulating, and leads to more questions than concrete answers… Is it a welcome change, to talk about things I experience with people who understand? Is it intrusive? Is it still impossible to express some things I feel? Sitting in on the medical sessions, I start to feel weirdly self-pathologized – when do I need to step back and disassociate from the medical discourse in order to retain some level of objectivity? What does it actually MEAN, anyway, to know this? What good does it do me right here, right now? What does it mean to make myself a research subject, to have my DNA floating around in at least a few different labs?

Some answers to those rather rhetorical questions are easier than others, but I find that parsing out exactly how I feel and how things effect me helps me cope with the influx of emotion that Conferences bring.