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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

DINET News: Goodbye old friends, welcome new ones


edriscoll

from Ellen Driscoll, President Dysautonomia Information Network - DINET

As people who live with, or have loved ones living with, Dysautonomia, we know it is frequently a roller coaster ride of a life.  We have good days and bad days and sometimes it is very tough to remember what a good day felt like when we are in the middle of a string of bad days.  We also tend to hear and read some of the most dismal and dark information about our illness and our road ahead.  But we have good stories, great stories too.  Stories from patients who are managing their illness and enjoying life after years of struggle.  Stories from caretakers who are seeing smiles more often and pain less and less, from their loved one who is finally adjusting to their meds.  And we have stories of remission….recovery.  Stories that we have largely been told don’t exist or rarely do.

Good news, news of recovery!

Two of our board members are managing their illness and have recovered enough to return to full time work.  While we are always thrilled to hear news of wellness, it is particularly sweet when it is one of our own.

Michael Blaney has served as a DINET Volunteer and Board Member since 2015.  Michael spent time contributing to the Forum as an Ambassador, as well as working as the designer for our newsletter.  For the past year, Michael has contributed to our Facebook page making updates and sharing information with all of you.  Now that Michael’s health has improved to a great degree, he is excitedly returning to school and planning a much more challenging schedule.  Michael has been an asset to the DINET Board of Directors in many ways and will be missed.  We all celebrate Michael’s recovery and wish him the best of luck in his educational and professional pursuits.

Michelle Sawicki founded DINET.  After developing POTS in 1999, she became frustrated by the lack of resources and information about this disorder.  Thankfully for all of us, she decided tMichelle_Sawicki.JPG.aa6c849a85828eb1437b28b61092690d.JPGo do something about it.  Using her educational & professional background in Library and Information Sciences, she researched and cataloged reams of information about this illness.  She shared that information with the world, as the web site PotsPlace in 2002.  A year later, she merged and expanded that information into the Dysautonomia Information Network (DINET).  Establishing DINET as a non-profit organization as well as a website capable of connecting patients and caregivers worldwide.  Michelle served the organization as President from 2003 - 2011 and returned to serve as VP from 2015 to 2017. Michelle’s energy and commitment to this organization has helped thousands of people struggling to understand this illness.   Michelle’s busy work and life in Missouri has made serving on the board very difficult for her recently.  We greatly appreciate her willingness to stay on long enough to pass on her wisdom to the rest of us that will be moving into new leadership roles at DINET.

Another goodbye and thank you goes out to a valued member of DINET’s Forum Team, Corina Rietbroek-Methorst.  Corina has been a member of DINET since 2004 and became a Forum Moderator in 2013.  Corina lent her empathetic voice to her work as moderator. She answered questions, found resources for other members and generally guided users to have the best experience possible on our forum.  Corina leaves DINET to tend to family responsibilities.  She will be sorely missed by the DINET staff and especially by our forum users.  DINET wishes her all the best.

Changing Roles & New Members

Sarah Abraham has been serving on the DINET Board of Directors since 2015 and most recently served as Board Secretary.  Sarah has been a volunteer with DINET for many years and has worked in many different areas of the organization, giving many hours of tireless work in her role as Forum Moderator in particular.  Sarah has jumped into every project where help was needed and has gathered an enormous amount of experience and knowledge in doing so.  The DINET board is very happy to announce Sarah Abraham as the new Vice President.

In addition to these changes, we are beyond excited to welcome members to new roles within the organization.  Joining the Board of Directors as General Members are Chelsea Goldstein and Trudi Davidoff.  I’m sure Chelsea’s name is familiar to most of you.  She may have even interviewed you once upon a time.  Chelsea has contributed to the DINET newsletter as the writer of the Meet the Member column for many years.  Her insight, talents and dedication has helped us to know one another, near or far, in so many ways that would have been difficult without her and certainly wouldn’t have been as interesting.  

Trudi Davidoff is new to DINET but not to online knowledge based sites.  Trudi brings a wealth of talents for research and information gathering as well as a sincere desire to help and support others living with dysautonomia.  In addition to her board responsibilities, Trudi will be writing for the DINET newsletter.  In fact, this edition features the writings of both Chelsea and Trudi, including Chelsea’s interview with Trudi for her Meet the Member column.  

DINET is very lucky to welcome a new volunteer to one of the most vital roles within the organization.  The role of Volunteer Coordinator has been accepted by Lisa Burgess.  This role is critical for us, not just because we rely on recruiting volunteers to get the work done, but because our volunteers are the face of DINET.  When a person first finds our site, maybe after searching for answers for weeks or months, it is the work that the volunteers do that makes the first impression.  It gives that person their first sense about whether this “place” is going to be a safe home for them.  The Volunteer Coordinator is the essential role that marries that job with that particular volunteer.  It is the Coordinator who will let a person looking to volunteer feel that they are putting their effort into the right organization.  And it is the Coordinator who helps us keep our volunteers by keeping you informed, empowered and feeling valued.  Lisa joins us with a wealth of HR experience, an intelligent, creative mind and a personality that makes you feel you could talk to her all day.  

Please join me in welcoming a new group of volunteers - people generous enough to offer their talents, energy and skills to DINET.,  We welcome - Abi Shrapnell, Amy Keys, Sarah Phelps, Mona Hussein and Reanna Bibb all joining the writer’s group.  Dalia Shafi joins the forum team and Lauren Mlack will be coordinating our social media posts as well as creating graphics for us as needed.  

Finally, I am honored to accept the position as President of DINET.  I am truly excited to work with such a fantastic team of volunteers and board members.  I have been a volunteer myself for a number of years and when first asked to consider the role, I declined.   Not because I didn’t want it, but I felt that it was important to work my way through the organization and to really understand the challenges, as well as the assets, before taking on a leadership role.  Since then, I have served as the Managing Editor for the newsletter, Webmaster to the site, a General Board Member and finally Treasurer.  These roles prepared me well for the work that needs to be done.  This has never been a one or two person show.  DINET requires all of us to do our best, to remember why we are here and involved.  We may be the one, solitary thing that stands between a person feeling validated in their illness and feeling misunderstood and forgotten.  I promise to do my best to serve the dysautonomia community and the Dysautonomia Information Network.  

I hope you will feel energized and newly excited to be a part of DINET.  We have a solid team working together with new ideas and new ways to educate the medical community and new ways to continue to be a place of support and empowerment. Please let us know what you are thinking and the ways you feel DINET can better serve our community. 

Best of health for all of us,

Ellen Driscoll

Edited by edriscoll




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