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Here is one of the primary researchers I've been working with giving a presentation!
Hey everybody!
Last year I was diagnosed with an incredibly rare multi-systemic medical condition called Gould's Syndrome, one of a long list of diagnoses, that affects my brain, blood vessels, and the framework of how my body is built which leads to chronic illness, pain, and migraines/headaches. There are less than 1000 known worldwide cases, primarily children, and I bet you can guess why. Right now that's less than 1 in 8 Million.
One weird thing about having a condition like this is how often I end up educating medical professionals about my conditions and how to care for me. However, as medical research advances, more people are gaining knowledge and the data is growing. Currently, there are 3 groups researching this condition, 1 in Europe, 1 in California, and 1 in Boston. Europe started a conference in which researchers, doctors, and patients and their families come together to collaborate, share knowledge, and support each other. Now it's our turn!
This year, the The Gould Syndrome Foundation will be hosting a conference in Boston. Before, during, and after this conference, doctors and researchers will be meeting with patients and I am excited to say I have several appointments! What a gift, to have the opportunity to see doctors who know how to treat me.
There are less than a dozen Gould Syndrome aware doctors currently treating patients in the US so to be able to see them all at once is amazing! Now I just have to get there.
Your donation will go directly toward paying for travel costs, hotel, food, and co-pays for me to see specialists I would not otherwise be able to see. This could be life changing for me and I deeply appreciate your support.
Here is more info on Gould's Syndrome:
If you would like to donate to the foundation directly or want more info on the conference, here is the link:
Organizer
