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A Look Back and a Look Forward - 2017 to 2018



2017 was a year full of changes for DINET, changes that have had a positive impact on our members and the organization.  The year began with the launch of the new website, which almost overnight doubled our reach nationally and internationally.  Our forums saw a meteoric rise in new topics and continued discussions - a trend that continues to this day.  We entered into partnerships with organizations that provide very different, but equally important support for dysautonomia patients, caregivers and physicians.  And we have seen a significant increase in crossover discussions between our Facebook followers and our site members.

The outreach and growth has not only been within the patient community.  Through our partnership with Outcome Health, DINET now has digital information screens in thousands of neurology, cardiology and primary care offices, with more being added all the time.  

Here are some other important initiatives:

-- DINET produced a patient survey focused on gaining a better insight into the age of onset of symptoms and the diagnostic experience of our members.  The final results are still being WordCloudBest.png.e119639296125af7465e394cfef2ee2f.pngassembled for publication on our site.

-- For October Awareness, DINET produced Information Guides for patients to use to help explain autonomic dysfunction in simple, non-medicalized terms. October also produced many discussions and Facebook posts about the time it takes from symptom onset to diagnosis.  And along with the fantastic work from our partners, DINET reached thousands of new patients & physicians with information, resources and messages of hope and support.

-- Survey Sundays.  A new Facebook feature that asks a new question every Sunday about a different aspect of living with dysautonomia.  

-- Featured Member Projects launched its first set of members in November.  Every few weeks we share the talents and interests of a DINET member (or two).  The project can be anything that a member does to keep themselves active, entertained, and happy.  We’ve seen photos of member’s pets, beautiful artwork, music, movies, poetry, children’s books, gardens...the list goes on.  We’ve received so many requests to participate from members that we had to hit the pause button on new applications.  But keep checking back, we will be accepting new applications in January.

Our Partner Banana Bag Solutions are offering DINET members a special discount on their already discounte5a315caf08255_BBaglogo.jpg.ee766c16946ae2562d409ac226905899.jpgd subscription prices. A 10% discount on any subscription to their products for the life of the subscription.  This is a 10% savings on the already discounted subscription price.  Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout.  What an incredibly generous way to support our membership and the work we do. Great thanks to Banana Bag!

DINET is so very lucky to have an amazing group of volunteers willing to share their talents to help other patients and caregivers and to raise awareness about autonomic dysfunction in all its forms.  Without our volunteers, DINET would not exist.  We are a 100% volunteer based organization and we are all patients and caregivers as well.

Volunteering is a rewarding experience too.  It is a fact that giving is good for your health and it doesn’t take much to reap the rewards.  It is a tremendously restorative experience to put your own feelings of discomfort aside for a moment or two, and instead, to focus your energy on helping another person,  If you have found help, support or community through DINET, please consider giving back to the organization by helping out.  

Here are a few volunteer opportunities needed now…..

Forum Reader The role of a Forum Reader is a very important part of keeping the forum community safe & accessible for all members. The Forum Reader needs to have a solid understanding and familiarity with the Forum Guidelines. The Reader reads new posts and reports any guideline conflicts to the Forum Admin or Moderators.   The work can be done anywhere and at any time of day, but it is required that the Reader be able to login every other day to read new posts.  The forum operates as a team so all members need to be comfortable working with other people in an online environment.  

Forum Moderator in Training  A Forum Moderator is a critical role in the forum community and requires training.  To be considered for this role, a volunteer needs to be an active forum member in excellent standing for a minimum of 6 months. A Moderator in Training begins as a Forum Reader to acclimate to the reporting structure and the types of conflicts most commonly seen.  The Moderator’s position requires logging in to read and edit (if needed) 3 - 4 times per week.  The Moderators and Administrator work closely together to make decisions about content and guidelines, so it is important to be able to work within a group effectively.  

The Forum positions are some of the most rewarding volunteer opportunities available with DINET.  To learn more about volunteering on the Forum, or to begin the application process, please email the Forum Administrator at dinetforums@dinet.org  

Social Media Assistant   DINET is ramping up our social media activity but we need help to do it.  Our Facebook page interactions have quadrupled in the past 6 months and are growing more each week.  Our Social Media Coordinator needs someone who would really enjoy posting, linking and chatting online with patients living with dysautonomia.  To volunteer in this position, you need to be very familiar with Facebook and at least one other - Twitter, Instagram, Youtube, SnapChat.  The position would require a commitment to post at least 2 days per week.  To learn more or to apply, please email webmaster@dinet.org

Website Proofreader  If you have an eye for details, can take good notes, know how to check web links and generally have a good command of the english language, this is a perfect volunteer opportunity for you. This position only requires 2 - 4 hours per month and it can be done at any time convenient for you.  There may be times when your help is requested for a specific project or task, but this would be arranged in advance.  The work requires going through content and taking notes for any typos, misspelled words, grammatical/punctuation errors, checking links to be sure they go to the appropriate page and taking notes about any errors found.  This is a great way to volunteer especially if you are not sure how much time you can devote or if you have been away from work for a while and are not sure how much you can take on.  If you are interested in this position, please email webmaster@dinet.org

Thanks to all for a wonderful 2017!   Best of health for all in 2018...

Return to Newsletter Table of Contents - December 2017

Edited by edriscoll

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