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ALS Resources

If you have just been diagnosed with ALS, we encourage you to take advantage of the organizations and support groups available to you and your caregivers.

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Just Diagnosed? Next Steps

  • Discuss your diagnosis with your doctor and your neurologist.
    • It is usually best to schedule an appointment to meet with them in person and to be organized for that appointment with your questions.
    • Don't try to learn everything overnight.
    • Consider a second opinion. Discuss with your doctors if this may help and where best to get a second opinion.
    • Explore clinical trials that you may be eligible for. Check the ALS Association  and Muscular Dystrophy Association  websites for active clinical trials. Check 
    • Discuss exercise and diet with your doctor.
  • Check out patient advocacy organizations such as ALS Association (ALSA)  and Muscular Dystrophy Association (MDA) . The U.S. Department of Veteran's Affairs  offers extensive support for veterans diagnosed with ALS. Contact the Paralyzed Veterans Association  to inquire about these VA benefits.
  • Maintain your activities and healthy lifestyle.
  • Consider getting ALS multidisciplinary care at UC San Diego Health.
  • Ask questions – none are dumb.
  • Don't panic – there is plenty of time and resources to get your questions answered and your care organized.
  • Read about the disease if you want, but be prudent about sources of information. Lean on trusted organizations, such as ALSA .
  • Who should you tell? You decide who and what you want people to know and what you want to discuss.
  • You are in charge and there is plenty of time and resources to get your care organized

Medicare, Social Security and Other Benefits

Social Security Administration 
Apply online for disability, retirement or Medicare benefits. 1-800-772-1213

This is the official government website for Medicare and it allows you to apply for Medicare online and find information and answers to frequently asked questions. 1-800-633-4227. Note: SSDI beneficiaries diagnosed with ALS do not have to complete the 24-month Medicare waiting period. Find more details on the Social Security website.

California Health Advocates
Provides information about how to qualify for Medicare if you have a disability as well as other benefits programs and insurance options you can use with Medicare if you have a disability.

Health Insurance Counseling and Advocacy Program (HICAP) 
Part of California Health Advocates, HICAP provides free information and counseling on issues related to Medicare. 1-800-434-0222 (local San Diego office: 858-565-8772)

U.S. Department of Veteran's Affairs

VA administers a variety of benefits and services that provide financial and other forms of assistance to veterans diagnosed with ALS.

Help with Prescription Drug Coverage

My Medicare Matters
Sponsored by the National Council on Aging, this nonprofit organization offers education and information on Medicare prescription drug coverage.

This online tool, provided by the National Council on Aging, allows you to search for private and public programs that can help you pay for prescription drugs.

Partnership for Prescription Assistance 
This program helps qualifying patients without prescription drug coverage get medicines they need for free or at lower costs. 1-888-477-2669

Support Groups

For People Diagnosed with ALS and Caregivers:

In San Diego, meetings held at:

9990 Mesa Rim Road, #100
San Diego, CA 92121

Third Saturday of the month, 10 a.m. - 11:30 a.m.

To RSVP, call 858-492-9792

ALS Association’s Support Groups
Greater San Diego Chapter

Find support groups in other locations.

Support Groups for Caregivers

Men’s Support Group 
First and third Thursdays of each month at Vitas Innovative Hospice Care:

9655 Granite Ridge Road, Suite 300
San Diego, CA 92123

To RSVP, call Lydia Lombardi at 858-499-8901.

Southern Caregiver Support Groups
Held at Southern Caregiver Resource Center:

3675 Ruffin Road, Suite 230
San Diego, CA 92123

Locations vary. To RSVP and for more info call 858-268-4432 (ext. 108).

Veterans Administration Support Groups for Caregivers
Call Karin Kupka at the VA San Diego Healthcare System at 858-623-1801 for more information. Search for local support contacts in other areas.
Toll free-line for caregiver support: 855-260-3274

Online Support Groups

Muscular Dystrophy Association

Patients Like Me 

For help in an emotional crisis, call Access Crisis 24-Hour Hotline at 800-479-3339.

Resources for Caregivers

Major Support Organizations

Muscular Dystrophy Association (MDA) - Caregiver's section

ALS Caregiver’s Guide

This comprehensive guide to caring for someone with ALS is published by MDA. You can also order a free print copy from your local MDA office.

National Alliance for Caregiving

The National Alliance for Caregiving is a nonprofit coalition of national organizations focusing on issues of family caregiving with the goal of improving quality of life for families and care recipients.

National Respite Network and Resource Center

This is nation-wide directory of respite programs that can provide complete patient care in both home and hospital settings and is designed to help give family members a break from caregiver responsibilities.

Veterans Administration

The Veteran’s Administration offers a variety of caregiver support services. For more information on services available in San Diego, call Karin Kupka at the San Diego VA Health Care System at 858-623-1801.

Leading ALS Organizations

Muscular Dystrophy Association

ALS Association

ALS Society of Canada