2013 Recap
2013 was a year of tremendous growth and many firsts for Dysautonomia International. With the help of hundreds of amazing volunteers and generous donors, we held our first Dysautonomia Lobby Day on Capitol Hill (and a second lobby day), hosted our first national conference, battled insurance companies that are denying coverage for autonomic testing, launched the first POTS Research Registry, helped researchers recruit patients for groundbreaking dysautonomia research projects, presented a patient friendly research update from the 24th Symposium on the Autonomic Nervous System, and gave out our first four research grants. Our volunteers also organized the second annual Dysautonomia Awareness Month in October, held the second annual Dysautonomia Awareness Tweet-A-Thon, increased press coverage on dysautonomia, obtained proclamations from state and local governments, distributed newly diagnosed patient brochures to medical offices, and held fundraisers, large and small, all year long. Of course, we continued to provide patients and caregivers with educational resources, videos, resources, and connections to support groups that can help make life with dysautonomia a little bit more manageable.
A New Blog for a New Year
What better way to kick off the New Year than with another first – our first blog post on our new blog! Through this blog, we’ll be bringing you the latest dysautonomia news, events, and research, as well as guests posts from physicians, researchers and other experts.
When we have a new blog post, we will announce it on our Facebook and Twitter pages, so be sure to follow us on one or both of those sites. The blog will allow us to bring you more in-depth information that just a simple Facebook or Twitter post.
Our blog team is excited to offer “Dysautonomia Q&A” posts. A few times per year, we will reach out to our network of dysautonomia savvy physicians, physical therapists, psychologists, school social workers, lawyers and other experts to answer 10 questions submitted by patients and caregivers. The questions can be on any topic related to dysautonomia. If you would like to submit a question, please send your question to blog@dysautonomiainternational.org. We will select 10 questions that are applicable to a broad audience of patients, find an expert to answer each question, and publish their response on this blog . If your question is selected, your name and e-mail will not be published.
Dysautonomia International wishes you all a Happy Healthy New Year! We’re looking forward to new adventures in dysautonomia awareness, advocacy, and research in 2014.
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