ALS Ice Bucket Challenge Progress

 

COVID-19: A Global Pandemic

COVID-19 Frequently Asked Questions

Medical Advisory Council Statement

An ALS diagnosis can feel isolating and overwhelming for people living with ALS as well as their caregivers. We understand this time of social distancing can add a layer of complexity to coping with this diagnosis. In addition to telephone connection group offerings, we would like to encourage further engagement through our Peer Support Program. The Peer Support Program recognizes that often the best support one can receive is from someone who is accompanying you in the journey. The goal of the Peer Support Program is to connect those living with ALS and/or caregivers in a non-professional capacity to share experiences and mutual support. We invite you to join this program by submitting a Peer Support Interest form, at which time we will work to identify a match based on age, life experience and any special interests noted in your interest form: webnc.alsa.org/site/PageNavigator/NC_8_peersupport

As you know, we are currently experiencing a global health care challenge with the COVID-19 (Coronavirus) pandemic. We are monitoring all federal, state and local orders and adjusting our operations and services accordingly. At The ALS Association North Carolina Chapter, our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. That will not change.

Out of an abundance of caution for our patients, caregivers, families, staff and the general public, certain (temporary) changes are being made to the operations of our Chapter. As this situation is changing rapidly, we will adapt as necessary and communicate all changes to you as quickly as possible via email and social media.

Our mission does not stop, nor is it on pause. The ALS Association North Carolina Chapter remains committed to providing care services and supporting our community and families, advocating for continued and additional support from the federal government, and funding ALS research. Thank you for your patience, flexibility and understanding as we determine the best way to implement our mission during the COVID-19 crisis.

The ALS Association North Carolina Chapter Operations (updated April 1, 2020):

1. Office Operations

All Chapter staff are working remotely until further notice. We remain connected virtually through the cloud.

The Chapter implement staggered in-office staff hours for select staff necessary to perform core duties in managing Association business. This is the best way for us to maintain operational continuity while taking necessary safety precautions.

All other business travel is suspended.

We will continue to follow CDC, state and local public health recommendations.

2. Care Services

Our Care Services staff remains dedicated to providing as much care and support as possible. All staff are equipped to communicate via email, telephone and video/virtual means.

The following changes will be in effect until further notice:

Weekly Updates: We will be emailing weekly updates to our families living with ALS.

Phone Calls: Our care services staff will be making calls to patients throughout the state.

In-person Care: There will be no in-person support provided through connection groups or at Chapter-sponsored multidisciplinary clinics. The Care Services social workers will remain in close contact with their respective clinic teams in order to ensure they are still able to provide support to families whether they are being seen in-person or through telemedicine. Our Care Services social workers will still be able to provide follow up and assist newly diagnosed patients in getting the support they need at this time and as we navigate the impact of COVID-19 in the days to come. Care Services staff can provide phone support and virtual support through online platforms.

Connection Groups: We know that ALS is already an isolating disease and, in our efforts to minimize potential isolation and continue to build community, we have transitioned all Chapter-sponsored connection groups to telephone and virtual/internet groups. Connection Group facilitators will provide participants with detailed instructions on how to join.

Equipment Loan Closet: Effective March 25, 2020, our loan closet program is on hold until further notice to assure safety of both staff and the community.

Clinics: Contact your clinic to stay up-to-date on their services and operations:

Duke ALS Clinic. Stacey Asnani, LCSW, 919-668-2874 or 919-668-2939

Wake Forest ALS Clinic. Theresa Johnston-Crews, RN, 336-716-2309

Vidant Jim "Catfish" Hunter ALS Clinic. Natalie Cox, MSW, 252-847-1779

Atrium Health Carolinas Neuromuscular/ALS MDA Center. Fawn Paling, BSN, RN, 704-446-1900

New Hanover Regional Medical Center ALS Clinic. Javan Cutler, 910-662-7522

Salisbury VA ALS Clinic. Gail Beasley, RN, 704-638-9000

UNC ALS Clinic. Manisha Chopra, MD, 919-843-7857

3. Events

Due to the directives of federal, state and local officials to avoid large gatherings, as well as recommendations from the CDC and top medical officials, we are POSTPONING WITH THE INTENT TO RESCHEDULE, the following events:

* Triangle Walk to Defeat ALS

* Winston-Salem Walk to Defeat ALS

* Down East Walk to Defeat ALS

Other events may be impacted. We will keep everyone informed about the status of our events through our website, social media and email.

For Walks, we encourage you to continue to organize your teams and fundraise (while obeying CDC guidelines) for your designated event. We plan to have Walks around the state this fall.

4. General Information about COVID-19

* Centers for Disease Control and Prevention (CDC): www.cdc.gov/coronavirus/2019-ncov/

* World Health Organization (WHO): www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

* North Carolina’s Response: www.ncdhhs.gov/divisions/public-health/coronavirus-disease-2019-covid-19-response-north-carolina

* North Carolinians can text COVIDNC to 898211 to receive general information and updates about COVID-19. Sign up now to get regular alerts on the rapidly evolving situation and North Carolina’s response.

To receive all updates from us on Chapter operations and events, please make sure you are following us on our social media pages:

Facebook: @alsncchapter

Twitter: @alsncchapter

LinkedIn: The ALS Association North Carolina Chapter

Additionally, please reach out to us directly with any questions and/or concerns.

Thank you for helping to keep our community healthy and safe!

Sincerely,

Your North Carolina Chapter Care Services Team

Lynn Sanderson, BSW, Director of Care Services & Advocacy: lynn@alsnc.org, 336-757-2000

Claudia Beirne, Senior Care Services Programs Manager: claudia@alsnc.org, 919-390-0125

Meg Whitaker, MSW, Senior Care Services Social Worker: meg@alsnc.org, 919-390-0119

Erin Belleau, MSW, LCSW, Care Services Social Worker: erin@alsnc.org, 919-390-0120