Patient Programs
- The A. George Kerr Patient Fund This fund is designed to assist our patients with the unique financial needs caused by living with ALS. The Heath Millward Vacation Fund This fund provides patients and their families with vacations that will allow them to celebrate their lives together. ...
- The Children’s Program ...
- A.L.S. Family Charitable Foundation, Inc., Scholarship ...
- Cape Cod Patient Fund ...
What support is available to ALS patients and their families?
The Les Turner ALS Foundation offers a variety of financial support to ALS patients and their families, including grants and medical equipment loans. Navigation ALS Services Coronavirus (COVID-19) Information & Updates COVID-19 & ALS: Frequently Asked Questions Care Recommendations for Respiratory Issues Support Services Team
What does the ALS Association do for me?
The ALS Association's nationwide network of chapters and other partners provide localized patient and family support in communities across the country. This network of chapter-based professionals delivers a robust portfolio of care and support programs designed to enhance quality of life and support families affected by ALS.
What financial assistance does the Les Turner ALS Foundation offer?
The Les Turner ALS Foundation offers a variety of financial assistance to people living with ALS and their families. This includes the Walter Boughton Foundation Support Services Grants, the Dan Nelson Respite Care Grant Program, Assistive Technology Grant and the Stuart Rosen ALS Transportation Fund. Learn More
What is the ALS national chapter-based care network?
This network of chapter-based professionals delivers a robust portfolio of care and support programs designed to enhance quality of life and support families affected by ALS. If you’ve been diagnosed with ALS—or care for someone who has—quickly and easily access information pertaining to a variety of subjects related to ALS.
Is there any help for ALS patients?
ALS Association: the largest, national non-profit organization dedicated to ALS by providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers.
Who helps people with ALS?
ALS Support Services in the United States The Muscular Dystrophy Association (MDA) provides support services for families affected by muscular dystrophy, ALS, and related diseases. MDA has ALS Care Centers, ALS-specific support groups, educational materials, and more.
Does Medicare cover ALS care?
Medicare coverage is available for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Individuals with ALS may receive health care benefits through Medicare. Patients with this chronic condition may enroll in Medicare without any age restrictions.
What kind of treatment options are offered for a patient with ALS?
The Food and Drug Administration has approved two drugs for treating ALS:Riluzole (Rilutek). Taken orally, this drug has been shown to increase life expectancy by 3 to 6 months. ... Edaravone (Radicava). This drug, given by intravenous infusion, has been shown to reduce the decline in daily functioning.
Can ALS patients be cared for at home?
The most commonly provided home health care services for people with ALS are nursing and assistive care (personal care based onyour eligibility); however, other services such as therapy and hospice are available as well.
Can ALS patients live at home?
For most people, living at home is the preferred option. And most ALS patients are able to live at home throughout most or all of the disease's progression. It's typically the cheapest option, and allows you to stay in a place that is familiar and comfortable to you.
Does ALS qualify for Social Security disability?
On average, 1,000 people with ALS apply for Social Security Disability Insurance (SSDI) benefits every year. The ALS Disability Insurance Access Act of 2019 eliminates the required five-month SSDI waiting period for ALS applicants approved for benefits on or after July 23, 2020.
How much does it cost to care for someone with ALS?
ALS is a debilitating disease that leads to substantial physical disability and has a high mortality rate. Estimates on annual healthcare costs range from approximately $16,000 up to $200,000 and can vary depending on the stage of the illness. Indirect costs also add to the economic impact of the disease.
Is ALS covered by insurance?
Most people living with ALS qualify for Medicare and Social Security Disability Insurance—regardless of age. Medicare can cover the bulk of your healthcare costs and SSDI provides a monthly income.
What is the most promising treatment for ALS?
Currently, two drugs have been approved to slow the progression of ALS: riluzole (Rilutek), shown to increase life expectancy by three months, and edaravone (Radicava), shown to decrease decline of physical function by 33 percent at 24 weeks.
How quickly does ALS progress?
Typically, the disease will progress over 2 to 5 years after diagnosis. However, 20% of patients live for more than 5 years, and about 5% live for 20 years or more. The name describes the condition. Amyotrophic comes from the Greek.
Can ALS be slowed down?
There is no known cure. But doctors do have treatments and therapies that can slow down or ease symptoms in you or a loved one. Researchers continue to study ALS, hoping to learn more about its causes and possible new treatments.
How do ALS patients go to the bathroom?
Commode chairs, raised seats, safety frames, and portable urinals are used on or in place of toilets. They are designed to help you be safe, comfortable, and more independent.
Do ALS patients qualify for hospice?
Hospice Eligibility for ALS Patients are eligible for hospice care when a physician makes a clinical determination that life expectancy is six months or less if the terminal disease runs its normal course. In end-stage ALS, two factors are critical in determining prognosis: ability to breathe and ability to swallow.
What happens in end stage ALS?
Death Stage Death is the last and final stage of ALS. A patient eventually dies from a lack of oxygen and the inability to function lung muscles. The most common cause of ALS death is respiratory failure, followed by pneumonia and cardiovascular complications.
How do you talk to someone with ALS?
Tips for Communicating with an ALS PatientAmyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) affects around 30,000 people in the United States. ... Choose the Right Environment. ... Slow Down the Conversation. ... Allow Periods of Rest Before Conversation. ... Talk to the Doctor About Augmented Speech. ... Sit Face to Face.
What is the Florida chapter of the ALS Association?
The ALS Association Florida Chapter offers comprehensive support and resources for persons diagnosed with ALS, their families and caregivers. Amongst these programs are the Care Assist Grants, Activities of Daily Living Grants, and Transportation Grants. Grants can help provide people living with ALS and their families the much-needed equipment and services to improve daily life. Assistance is available on a quarterly basis for:
How to apply for a regional grant?
Process to apply: 1. Contact your Regional Program Manager to discuss your needs. 2. Your Regional Program Manager will provide you with the link to the grant application. 3. In the meantime, your Regional Program Manager can suggest transportation resources and county services available in your region. 4.
When are grants available for the first quarter?
Grant Quarters: Applications are open and available on the 1st of each quarter cycle, and close three weeks after the opening date: First Quarter: February – April (Applications available February 1st – February 22nd)
What to Expect Financially as an ALS Patient
The costs associated with treating ALS are high, to say the least. The economic burden of a single ALS patient in the U.S. can be as high as $69,475 per year.
Types of Financial Help for ALS Patients
If all of this sounds like a lot, just know that you are not alone. The good news is, whether you or a family member have been diagnosed with ALS, there is help available!
Conclusion
While there is currently no cure for ALS, that doesn’t mean that those who have been diagnosed with the disease can’t still live incredible lives with some help.
Frequently Asked Questions About Financial Help for ALS Patients
Yes! Government assistance is available through Social Security Disability Insurance, Supplemental Security Income, and Medicare/Medicaid, charities such as the ALS Foundation for Life, and viatical settlement companies such as American Life Fund.
What are some ways to improve ALS?from alstreatment.com
Many support groups don’t just have members who are dealing with ALS, they’ll invite guest speakers and run workshops on how, for example, to improve the condition through physical therapy or develop better nutritional habits. These sessions can be invaluable, particularly for newly diagnosed individuals.
What is the ALS Therapy Institute Forum?from alstreatment.com
The ALS Therapy Institute Forum is a similar community that provides a safe place for those with ALS as well as their care providers, family and friends. There are also a few neurologists and physicians on the site. Most of the posts are about living with ALS as well as the current state of research and treatment options.
What is an ALS community forum?from alstreatment.com
The ALS community forum is one of these and has thousands of different threads on many subjects, covering everything from being newly diagnosed with ALS and latest research to tips and tricks for coping with the disease. People are online all the time and anyone can take part in a conversation, ask questions and get the advice and support they need.
What is the mission of the ALS Association?from als.org
The mission of The ALS Association 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. Download our full mission toolkit. Read more about our programs. Share this:
What is support group?from als.org
Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness. Support groups exist entirely for you, the person with ALS, and your family or loved ones. Find a support group near you below.
What are the symptoms of ALS?from alstreatment.com
Online sites often point to the physical symptoms associated with ALS, things such as loss of mobility and muscle function, being unable to chew or swallow properly or issues with breathing.
Is there a support group for ALS?from alstreatment.com
There are numerous ALS support groups to be found online. If there are no support groups locally, the good news is there are plenty online. The internet is a great source of forums and chatrooms that are entirely devoted to people with ALS. The ALS community forum is one of these and has thousands of different threads on many subjects, ...
What is the ALS Foundation for Life?
ALS Foundation for Life#N#www.alsfoundation.org#N#(508) 655-4381#N#About ALS Foundation For Life: The ALS Foundation for Life is committed to providing funding for medical equipment, home modifications, and technological devices allowing patients some independence and sense of dignity.Their goal is to reach out into the ALS community to offer assistance and make an impact on the lives of patients and their families.
What is ALS in baseball?
ALS, or Amyotrophic Lateral Sclerosis, first came into public awareness when the baseball player Lou Gehrig was diagnosed with the disease. Since that time, the condition – a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord – has gotten a great deal of attention and greater understanding.
How does ALS affect life?
ALS eventually leads to death, and between the time that it is identified and the years that intervene, patients slowly become paralyzed.
Can you work with ALS?
People with ALS are able to continue working for a while before their disease disables them completely, and it is a good idea to investigate what benefits your workplace insurance may offer in terms of long-term disability and health care benefits.
What are the stressors of ALS?
Costs for medical treatment and services topped the list of stressors for people with ALS and their caregivers.
Can you be a caregiver for ALS?
For Caregivers. Being the primary caregiver for a loved one with ALS can be stressful — not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job. Often, caregivers are so busy supporting their loved ones that their own physical or mental health takes second priority.
What is ALS in medical terms?
About Amyotrophic Lateral Sclerosis (ALS) Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord with no known cause.
How old do you have to be to get ALS?
ALS usually occurs between the ages of 40 and 70. There are two different types of ALS, in the U.S. sporadic (accounts for 90 to 95% of cases) and familial (accounts for 5 to 10% of cases). Amyotrophic Lateral Sclerosis (ALS) Resources. ALS Association.
What is the National ALS Registry?from cdc.gov
National ALS Registry Partners: the largest, national non-profit organization dedicated to ALS by providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers.
What is the Florida chapter of the ALS Association?from als.org
The ALS Association Florida Chapter offers comprehensive support and resources for persons diagnosed with ALS, their families and caregivers. Amongst these programs are the Care Assist Grants, Activities of Daily Living Grants, and Transportation Grants. Grants can help provide people living with ALS and their families the much-needed equipment and services to improve daily life. Assistance is available on a quarterly basis for:
How long does it take to replenish Amyotrophic Lateral Sclerosis Fund?from healthwellfoundation.org
For our Amyotrophic Lateral Sclerosis Fund, patients may apply for replenishment within 12 months subject to availability of funds.
How much does HealthWell help?from healthwellfoundation.org
HealthWell assists individuals with incomes up to 400-500% of the Federal Poverty Level. The Foundation also considers the number in a household and cost of living in a particular city or state. If you believe you qualify for assistance, you may begin the application process here.
When are grants available for the first quarter?from als.org
Grant Quarters: Applications are open and available on the 1st of each quarter cycle, and close three weeks after the opening date: First Quarter: February – April (Applications available February 1st – February 22nd)
Is ALS inherited?from healthwellfoundation.org
There are two different types of ALS: sporadic and familial. Familial ALS is inherited, while sporadic ALS can affect anyone. Sporadic ALS is the most common form of ALS, accounting for 90 to 95 percent of all cases. ALS is approximately 20 percent more common in men than women. There is no cure for ALS.
Care Assist Grants
Activities of Daily Living (ADL) Grants
- ADL needs are met with assistive technologythat allows people living with ALS to complete general activities of daily living as independently as possible. For detailed information on the expenses covered by our Care Assist Grants and ADL Grants, please review our Grant Guidelines. Payment is made directly to the vendor or service provider whenever ...
Grant Quarters
- Applications are open and available on the 1st of each quarter cycle, and close three weeks after the opening date: 1. First Quarter: February – April (Applications available February 1st – February 22nd) 2. Second Quarter: May – July (Applications available May 1st – May 22nd) 3. Third Quarter: August – October (Applications available August 1st – August 22nd) 4. Fourth Quarter: …
Transportation Grants
- Transportation grants are available on an as-needed basis. This allows for transportation to an ALS Certified Center of Excellence or Affiliated ALS Clinic with The ALS Association Florida Chapter.