September 2022 Newsletter

September 2022

There is important information in this issue regarding a change to Emory Healthcare Patient Portal so be sure to read the entire article.

Have you seen the Emory ALS Center Online Resource Guide on our website? It is an expanded version of the information that is in the folder you may have received on your first visit. The Online Resource Guide has answers to questions, links to resources, and many tools to help navigate living with ALS. The Patient Resources section alone has 26 pages of information for you. CLICK HERE to access the Online Resource Guide.

This Saturday, September 24, 2022 is the Walk to Defeat ALS, hosted by the ALS Association Georgia Chapter, at Georgia State Stadium (Center Parc Stadium). This is always a fun morning of being with other ALS families, spreading awareness, and fundraising. CLICK HERE for more details and to register.

Some of our patients have received this information but others have not. We want to make sure you are aware of a change coming to Emory Healthcare. Make sure to read all the information below. A reminder that you can still reach us for any medical concerns (not about My Chart) by calling the Emory Call Center at 404-778-3444.

On October 1, 2022, Emory Healthcare will start using Epic, our new system for electronic health records that includes your new patient portal called MyChart.

Moving to Epic will combine our multiple patient portals – Emory’s Blue, Gold, HealtheLife, Eye Center and Emory Decatur portals – into a single system. This will allow you to access all of your Emory Healthcare medical records with a single sign-on, connect all our hospitals and clinics to one system, and make it easier for you to manage your care online.

What is MyChart?

MyChart is Epic’s secure, online patient portal that will make it easier for you to manage your health.

In MyChart, you’ll be able to check in for your appointments, view medications and request refills, view and schedule certain appointments, message your provider, join telehealth appointments, view and pay your bills, obtain price estimates, and much more.

What do you need to do?

Visit the Epic Resource Center for more information about the change from your current portal to MyChart.
Between September 28 and October 1, patient portal messaging will not be accessible, so you will need to call your provider with any questions or requests for prescription refills.

Please call the MyChart patient support line if you have any questions. They are available at 404-727-8820, Monday-Friday, 7:30 a.m.-5 p.m. EST.

Keep reading here for Frequently Asked Questions

What's happening in ALS Research?

We are back to full-speed in the laboratory with investigations on multiple topics using a variety of methods. One example is our search for genetic factors that might "modify" ALS disease activity. Here we are comparing DNA, RNA, and protein expression from people with early vs. late onset disease and slowly progressive vs. rapidly progressive disease. We are also searching the genes of people who are healthy and do not have ALS, but who carry a genetic mutation that typically causes ALS. Why are they "resisting" the onset of disease? Another example is the discovery of "cryptic exons", which are pieces of RNA that normally are not made into protein, but in the context of ALS are "released" to make small pieces of protein (called cryptic peptides). These peptides, if they can be measured, will provide an important biomarker of ALS pathology that might be used for diagnosis, prognosis, or even measures of disease activity during clinical trials. There are several other projects underway using the techniques of genomics, proteomics, cell modeling, and even the creation of animal models.

The clinical trials taking place at Emory ALS Center can be found HERE.

Our clinical research studies (do not involve treatment with an experimental drug or testing of an experimental device) can be found HERE.

If you are interested in participating in research, contact the member of the research team. The contact name and email address are located next to the study they are leading.