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Patient Resources

When you or a loved one is diagnosed with ALS, your first reaction is typically shock and fear. You may be overwhelmed and very emotional, and have many questions. You might not have ever known anyone with ALS and feel alone – but you are not alone! There is support available and it is important to engage early and seek support.  Resources available to help you through your journey with ALS are listed below and also available by item listed on the left side of this page.  

Contact us at the Emory ALS Center Office:
Phone: 404-778-3444     Fax: 404-778-3495
 

Patients can sign up for the email portal by calling 404-727-8820. Patients with speech problems, please have family call our office and leave their email address.

COMING SOON: Monthly Support Group – with Michelle Hammond-Susten, LCSW -- You’ve been diagnosed with ALS – now what? Often much of the information received at the time of diagnosis if overwhelming and feels like a blur. This monthly group for newly diagnosed patients and caregivers, or those who are new to the Emory ALS Clinic will address many of the questions you have. What to expect and what are the benefits of attending ALS clinic, how to prepare for your first clinic, reputable resources for further research, and getting connected with the Emory patient portal for communication with the team are some of the topics that will be discussed. The group will meet at Executive Park – check this page for day and time.

The Goode Foundation – Lodging Assistance: The mission of the Goode Foundation is to support, assist, and empower ALS patients and families, and inspire the pursuit of improved treatment and research toward a cure. Sometimes clinic appointments require an overnight stay for patients who live outside the metro Atlanta area. For those whose travel to Emory ALS Clinic is more than 1 ½ hours, the Goode Foundation will assist in reserving and covering the cost of an overnight stay at the Emory Conference Center on the night prior to the clinic appointment. CLICK HERE  to contact the foundation for assistance.

FACT Relief Foundation: FACT Relief Foundation’s goal is to help ease the burden and worry associated with concerns for the financial stability of the family as well as assist in planning for a family’s longer-term needs. They accomplish this by offering targeted financial support as well as long term planning and guidance for the benefit of these families with a demonstrated need. FACT Relief looks to help with more than just uninsured medical expenses, realizing that families experience the financial burden of day-to-day living expenses as well. http://www.factrelief.org/

 Benefits and Resources for Military Veterans with ALS: CLICK HERE

 ALS Association Georgia Chapter: The ALS Association of Georgia has Patient Services staff members who are available to ALS patients and their families from the time of diagnosis. They will assess a patient’s needs, recommend equipment and help families plan for the future.

 The ALS Association of Georgia also offers a medical equipment loan program through which patients may receive items not covered by insurance, such as power wheelchairs, communication devices or shower chairs, etc. The ALS Association of Georgia delivers equipment to ALS patients and provides training for families.

 The ALS Association Georgia Chapter is located at 5881 Glenridge Dr. - Suite 200 - Atlanta, GA 30328. Phone number is (404) 636-9909. www.alsaga.org

 Muscular Dystrophy Association (MDA) – Greater Atlanta and Greater Macon locations: MDA covers ALS as one of the 43 types of muscle debilitating conditions they cover.  MDA has a family support team whose job is to meet families at their time of diagnosis and assist during times of need throughout the process.  The family support team provides emotional support and has educational resources available locally.  MDA also has a National Resource Center where trained professionals can help provide information and respond to questions associated with ALS.  They will help you identify local and national resources as well.

 Locally, MDA has an equipment loaner program which receives and lends donations of equipment such as scooters, manual and power wheelchairs, and occasionally hospital beds.  MDA works with local vendors to maintain the program and will often deliver equipment to families.

 MDA’s locations cover all of Georgia as well as many locations sites throughout the Southeast and nationwide.  To locate the office closest to you, please visit www.mda.org and type in the zip code.  To reach the family support team, please call 770-621-9800; they are located at 2310 Parklake Dr., Suite 375, Atlanta, GA 30345 and can connect you with the resources and office locations best for you.

 National ALS Registry: The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Registering and taking the surveys can help make a difference in the lives of those living with ALS today and for generations to come. Enroll now at: www.cdc.gov/als

 NEALS (Northeast ALS Consortium): The mission of the Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease. To achieve that goal, NEALS functions as an academic research consortium, a contracted research organization, and a resource tool for ALS community. https://www.neals.org/

 ALS Untangled: ALSUntangled helps patients with amyotrophic lateral sclerosis (ALS) to review alternative and off-label ALS treatments.  www.alsuntangled.com

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