Ice Bucket Challenge Progress


9/14/18; 11:20 pm
We want you to know that our thoughts are with everyone, especially those living with ALS, in the path of Hurricane Florence. We hope that you are in a safe location. Hurricane Florence is crawling along dumping massive amounts of water across the region and the storm is not expected to fully exit North Carolina until sometime Monday night. Flooding is already a major problem in New Bern and is expected to be worse than it was during Hurricane Matthew in areas around the Cape Fear and Lumber rivers. Again, we strongly encourage you to heed warnings to evacuate if you can. If you cannot get out and need to be rescued, call 9-1-1. We will continue to monitor the storm and as always, we remain committed to providing compassionate care and support to all people living with ALS. Please stay safe.

As we prepare for Hurricane Florence and its aftermath, we are reminded that emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. While we are not a disaster response organization or direct care provider, we recognize how important it is that people living with ALS and their family members have the resources they need to make plans to protect themselves. This is why in August, we mailed disaster preparedness kits to the nearly 600 families living with ALS that we serve.

Hurricanes are unpredictable and extremely dangerous, especially to people living with ALS. North Carolina is expecting extremely high winds and the potential for as much as 2 feet of rain with Hurricane Florence. Please comply with state and local evacuation warnings for your area. We strongly encourage all of our patients in the path of the storm to seek adequate shelter, especially those living near the coast, in mobile homes or in flood prone areas. You can search for open shelters near you by texting SHELTER and your zip code to 4FEMA (43362). Example: Shelter 01234. (Standard text message rates apply.)

Our staff will be bracing for the storm just like you and our office will be open during normal business hours as conditions allow. Once the storm has passed, we may not be able to open our office until conditions improve. We will be responding to non-emergent emails and calls as we are able depending on power availability and access to the internet. Remember, if you lose power or internet access, you may not have access to important telephone numbers stored on electronic devices

PLEASE NOTE: This website has many resources to help you plan before the storm.

PLEASE print all relevant information you may need to access in case of an emergency so you are prepared in the event of lost power or Internet access. Click here for a more detailed preparedness guide.

Additional Resources: Emergency and Medical Information, Emergency Professionals Information, Communication Board with Pictures,Eye Gaze Board.


Contact your local fire department and other first responder organizations and report to them that a person living with ALS resides in the home. Make sure they understand any specific medical needs (e.g. tracheostomy, ventilator-dependent, feeding tube, mobility issues etc.) In the event of an emergency or disaster, the 911 system would have a “disability notice” through the Computer Aided Dispatch (CAD) that would alert responders that a person living at that residence needs additional attention immediately. The address also appears on EMS computers during 911 calls, serving a double purpose.

Contact your local electric service operator to ‘register’ the household as having an occupant requiring electricity for medical devices. This may include providing documentation of disability. This must be done ahead of time and not during a disaster. If you have not yet registered, please try to do so as soon as possible.

Find local North Carolina County Emergency Management Offices here:

Emergency shelters may be opened should a hurricane approach North Carolina. Before heading to a public shelter, first consider staying with family and friends or in a hotel out of the evacuated area. If those options are unavailable, the American Red Cross will provide a safe place to stay when you have no other place to go. Cots and blankets will only be provided in the public shelter after hurricane conditions subside. Although food may be provided, specialty items for individuals on restricted diets may not be available. If you plan to evacuate to a shelter, you will want to carry the supplies listed in your Disaster Supplies Kit, PLUS:

  • Blankets, sleeping bags, pillows and cots.
  • Special foods, if you are on a restricted diet.

(Please Note: ‘Regular’ shelters may not have the electrical service or additional staff required for persons using power wheel chairs or other medical equipment requiring electricity.)


Review and keep the important information below handy in the event of an emergency or disaster.

Important Links:

Important Phone Numbers:

  • Emergency: 911
  • FEMA: 800-621-3362
  • NC DOT Statewide Road Closures: 511
  • Disaster Distress Helpline: 800-985-5990
  • Disaster Distress Helpline is a resource available 24 hours-a-day, seven-days-a-week that provides immediate services to anyone who may need crisis counseling after experiencing a natural or man-made disaster or tragedy.

American Red Cross:

Red Cross - Eastern North Carolina Region

  • Triangle Area Chapter - 919-231-1602 - Serving Chatham, Franklin, Johnston, Lee, Wake and Warren Counties
  • Cape Fear Chapter - 910-762-9663 - Serving Brunswick, Carteret, Columbus, Craven, Duplin, Greene, Jones, Lenoir, New Hanover, Onslow, Pamlico, Pender and Wayne Counties.
  • Central North Carolina Chapter 919-489-6541 - Serving Durham, Granville, Orange, Person and Vance Counties
  • Sandhills Chapter - 910-867-8151 - Serving Bladen, Cumberland, Harnett, Hoke, Moore, Richmond, Robeson, Sampson, and Scotland Counties
  • Northeastern North Carolina Chapter - 252-355-3800 - Serving Beaufort, Bertie, Camden, Chowan, Currituck, Dare, Edgecombe, Gates, Halifax, Hertford, Hyde, Martin, Nash, Northampton, Pasquotank, Perquimans, Pitt, Tyrrell, Washington and Wilson Counties

Red Cross - Western North Carolina Region

  • Charlotte Metro Chapter - 704-347-8238 - Serving Mecklenburg and Iredell Counties
  • Southern Piedmont Chapter - 910-762-9663 - Serving Anson, Cabarrus, Montgomery, Rowan, Stanly and Union Counties.
  • Piedmont Triad Chapter - 336-333-2111 - Serving Alamance, Caswell, Davidson, Davie, Forsyth, Guilford, Randolph, Rockingham, Stokes, Surry and Yadkin Counties
  • Sandhills Chapter - 910-867-8151 - Serving Bladen, Cumberland, Harnett, Hoke, Moore, Richmond, Robeson, Sampson, and Scotland Counties
  • Blue Ridge Piedmont Chapter - 828-322-4151 - Serving Alleghany, Alexander, Ashe, Avery, Burke, Caldwell, Catawba, Cleveland, Gaston, Lincoln, Watauga and Wilkes Counties
  • Asheville Mountain Area Chapter - 828-258-3888 - Serving Buncombe, Cherokee, Clay, Graham, Haywood, Henderson, Jackson, Macon, Madison, McDowell, Mitchell, Polk, Rutherford, Swain, Transylvania and Yancey Counties


Additional Resources:

Prepare. Plan. Stay Informed.

By Alisa Brownlee, ATP

Be prepared. It takes work, but it is worth it! The more you do, the more confident you will be that you can protect yourself when the time comes.

Make a plan. The plan should include:

  1. Know what kinds of disasters (especially weather/natural disasters) could happen in your area and consider what your environment might look like after one occurs. Sign up for alerts from FEMA or local weather sources. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number. ReadyNC app
  2. *Complete a personal assessment and personal support network of family, friends, relatives, neighbors, roommates and co-workers who could assist you at a moment's notice. Keep this list handy at all times. Make sure your personal support network knows your plan (whether you plan to evacuate, where you will go or if you will stay at home).
  3. *Make an emergency information list so others will know who to call if they find you unconscious, unable to speak, or if they need to help you evacuate quickly.
  4. *Compile a medical information list that contains the names and numbers of your doctors, your medications, dosage instructions and any existing conditions. Make note of your adaptive equipment, allergies and any communication difficulties you may have.
  5. Keep at least a seven-day supply of medications on hand. Ask your doctor or pharmacist what you should do if you cannot immediately get more.
  6. Identify evacuation routes and safe places to go during a disaster. Remember that in the event of a natural disaster you may be under mandatory evacuation. Should this occur and you don’t have accessible transportation, call your local police department and inform them of your situation.
  7. Keep a disaster supply kit, also known as a “go bag,” in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, adaptive equipment and batteries.
  8. *Show others how to operate your wheelchair or other assistive devices.
  9. Advocate for yourself. Tell someone the best way to safely guide or move you and your adaptive equipment. Give short, clear and specific ways (verbally or in writing). Keep in mind that during an emergency, you may need to explain to first responders and emergency officials that you need to evacuate and shelter with your family, service animal, caregiver or personal assistance provider so they can provide the support you need to maintain your health, safety and independence.
  10. If you cannot verbally communicate, make sure you always have a Rapid Access Communication System in place. This could include a letter board, laser pointer, or other communication system that does not rely on electricity. You can find more information at
  11. If you have a service provider coming into the home (home health, palliative or hospice care, respiratory therapy company etc.), talk to them about their emergency plans.

*See Medical Information Packet, Key Medical Information Card, Printable Eye Gaze Board and Medical Information:

Other Considerations:

If you rely on a ventilator, cough assist device or other necessary medical equipment that requires electricity or battery back-up, you may want to have a back-up generator and adequate fuel supply for power outages. Backup/portable batteries should be charged and tested. Make sure you are comfortable using those batteries in the case of a loss of power. Understand that if you do lose power, your battery is intended to give you time to get to a safe place that has power.