ALS Ice Bucket Challenge Progress



Every year, thousands of people are impacted by severe weather threats. Last year was the most active year in disasters in recent history, with more than 1,000-weather related fatalities and more than 8,000 injuries.

Every state in the U.S. has experienced severe weather; although some more than others, everyone is at risk and should take steps to prepare for severe weather that can strike in their area. Knowing the most common weather hazards in your region, your vulnerability, and what actions you should take can save your life and the lives of others.

You should prepare yourself and your family for a disaster by making an emergency plan. It is advised that you print this guide, along with other relevant emergency preparedness information and materials, in the event that you lose power and/or internet access.


  • 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.).
  • Ask your local fire department, and other first responder organizations, if they have any personnel or volunteers that could come to your home to work with you and/or your family/caretakers on an evacuation plan in the event of an emergency.
  • 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. 
  • 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. 
  • Always check and make sure your smoke detectors (and carbon monoxide detectors) are installed, working properly, and have backup batteries. 
  • Have evacuation plans both in the event of a natural disaster, emergency or a fire.


People who require power for medical or others assistive devices should consider how they will maintain the use of these devices if there is a loss of power, especially when loss of power may jeopardize health or safety.

  • Equipment that may require power:
  • Hospital beds (make sure yours has a crank option)
  • Lift recliner
  • Bi-Pap
  • Suction machines
  • Air mattresses
  • Electric patient lifts
  • Power wheel chairs
  • Ventilators, cough assists
  • Stair glides
  • Elevators
  • Communication devices
  • Keep extra batteries for small devices (hearing aids and cell phones, for example)
  • Consider obtaining a generator and adequate fuel supply
  • Carry a charger if/when away from home.
  • What to do:
  • Keep extra batteries for small devices (hearing aids and cell phones, for example)
  • Consider obtaining a generator and adequate fuel supply
  • Carry a charger if/when away from home.


  • Keep at least a seven-day supply of medications and food on hand, ESPECIALLY if you require nutrition through a feeding tube.


  • 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 assistive devices/equipment, allergies, and any communication difficulties you may have.
  • Be sure to compile existing medical documents that you have, such as medical directives, DNRs, and living wills.
  • Complete online and print (or print and complete) a copy of this. This Packet allows a person to provide medical information regarding specific issues related to ALS care and how your issues can most appropriately be addressed.


      • The Key Medical Information app provides medical personnel with critical information to care for a person with ALS during an emergency. In addition to medical dos and don’ts, the app provides a communication board and emergency contact fields for users to reference.



  • The Medical Information “Z” Card provides a brief summary of critical ALS issues, including a mini-letter board, which can be folded and kept in a wallet.


These include, but are not limited to, air conditioning, heating, transportation, water, and food preparation.

  • What do:
      • Prepare and have a contingency plan ahead of time. Hope for the best but be prepared for the worst.


  • Emergency: 911
  • Transportation Hotline (Road Closures): 511
  • FEMA: (800) 621-3362
  • 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.


  • ALS Key Medical Information


  • ALS Association
  • American Red Cross
      • Find information on preparing for, responding to, and mitigating emergencies at
  • Federal Emergency Management Agency (FEMA)
  • Disaster Assistance Improvement Program (DAIP)

Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans with ALS, emergencies such as fires, floods and acts of nature present a real challenge. It is important that people with ALS and their family members make plans to protect themselves in the event of a disaster. This needs to be addressed not only at home, but also when away from home, such as at work or on vacation.

First Step: Make the conscious decision to 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. 

Second Step: Make a plan. The plan should include:

  • 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.
  • 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 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.
  • 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.
  • 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. 
  • 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. 
  • 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. 
  • Show others how to operate your wheelchair or other assistive devices.
  • 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. 
  • 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

The third step is to be informed.  There are various web sites for preparedness:

Prepare for Emergencies Now: Information for People with Disabilities

Preparing Makes Sense for People with Disabilities and Other Access and Functional Needs