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Amyotrophic Lateral Sclerosis Association

Rating: 2.2 stars   5 reviews 1,419

Address:

1275 K Street Nw No 250 Washington DC 20005 USA

Mission:

Leads the fight to cure and treat als through global, cutting-edge research and to empower people with lou gehrig's disease and their families to live fuller lives by providing them with compassionate care and support.

Programs:

Research programs - the association funds scientific research grants to doctors/scientists to find the cause and cure of amyotrophic lateral sclerosis (als). During the year ending january 31, 2015, research grants were $12,918,711, which almost doubled the amount of research grant funding from the prior year. The significant increase was made possible by the ice bucket challenge (ibc), an organic fundraising event that empowered individuals to raise awareness and funds for als by pouring ice water over their heads and challenging their friends to do the same. The association was the main benefactor of this event and received approximately $115 million in contributions as a result. Because of the success of the ibc, the association plans on further increasing research funding in ensuing years with the goal of spending over $20 million annually on research.

patient and community services - the association's national care services department, in working with the association's network of chapters, is committed to providing fully developed, managed and evaluated programs and services to people living with als, families, caregivers and professionals across the united states. Programs incorporate the perspectives from key stakeholders including people living with the disease, subject matter experts, clinical best practice, caregivers, technology, academicians and research. Activities address current needs and explore future services, creating a foundation for innovative and advanced program development based on specific community needs and knowledge advancements. Specific activities include (1) developing and implementing clinical and professional education programs based on ongoing needs assessments and best practice; (2) implementing certified care center certification and recertification programs based on nationally-recognized standards of practice, including grants to support centers of excellence; (3) developing strategies and actualizing plans to deliver care through 'other than' certified centers; (4) providing current information, resources and referrals to the communities we serve; and (5) developing and implementing comprehensive, consistent programs and services that address individual, family and caregiver needs based on 'best practice' and available resources. As a result of the success of ibc, the association was able to provide grants of approximately $8. 5 million to its chapter network to help support chapter initiatives for the year ending january 31, 2015. In addition, the association provided approximately $1. 1 million in grants to its certified treatment centers of excellence.

public and professional education - the association's public policy department develops awareness and understanding of als and the work of the association among the general public, healthcare professionals, the scientific community and elected and other government officials. For the year ending january 31,2015, the association worked with congress to continue funding for the national als registry and the als research program at the department of defense as well as funding for als research at the national institutes of health. The association also worked with congress to help ensure access to speech generating devices and advance the development of new treatments for als by working to pass the moddern cures act.

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More Info

(202) 407-8580
www.alsa.org

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Reviews for Amyotrophic Lateral Sclerosis Association

Rating: 2 stars  

1 person found this review helpful

Would donate to local chapters that provide services, but national organization is inept and self-perpetuating rather than mission-driven. If you wish to support ALS research, would suggest an academic institution/specific lab or project directly.

 
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Rating: 4 stars  

21 people found this review helpful

I am the daughter and a caretaker of my mother who is in advanced stages of ALS. We have benefitted directly from the services of this organization and those of the local chapter as well. I also formerly operated 2 national non-profit organizations. I am disturbed by some of the negative comments I see here and that I have seen online claiming the ALSA uses only about 20%-22% of its funding for services/research. If you look at the financial statements, that simply is not the case. The statement on this site for the fiscal year ending Jan 30, 2012 shows 67% of funds spent going to program services, 22% in fundraising, and 11% to administration. Program services are the main efforts of the organization: ALS Research, ALS Education and Awareness, and ALS Patient and Community Services. These are the activities the ALSA promotes as their primary function, and they are spending their money consistent with that purpose. 22% went to fundraising and while that may seem like a lot, it takes a great deal of effort to get charitable contributions, especially for a less common and less known disease in tough economic times. They must compete with many other “causes” for donations; and getting a one-time donation is one thing, but turning that into a consistent donor is key to PROGRAM stability. Keep in mind that none of the PROGRAM SERVICES – Research, Education/Awareness, and Care/Community Services can happen if they don’t have money – so the fundraising budget is extremely important! The Administrative expense of 11% is very reasonable – somebody has to managed the general affairs and business of the organization, oversee personnel and programs, oversee funds and budgets, etc. Also, if you look at the tax returns/annual reports of the ALSA you will see that in addition to their paid staff (nearly every association or foundation of large scope has paid staff – skilled, hardworking people who need to earn a fair living in exchange for work they perform), they operate with the support of many volunteer hours from their board and many others who give time to the organization. Moving to 2014, the most current financial statements for the period ending Jan 30, 2014, the numbers look even better: only 7% Administrative expense, 14% Fundraising expense, and the remaining 78% to Program Services (I know that’s only 99% - the numbers rounded down make 99 rather than100). http://www.alsa.org/about-us/financial-information.html
With the ALS Ice Bucket Challenge going on and so many generous donations coming in to the ALSA, there is an unprecedented opportunity to fund much needed research and services. This means hope, assistance, support, and advocacy for many people with ALS, like my mother, and families like ours who are dealing with the effects of this disease minute by minute. I think it is important that people have correct information. Don’t believe anybody’s comments. Study the financial and annual reports and tax returns yourself if you are concerned. They are here and on http://www.alsa.org

When was your last experience with this nonprofit?

2013

 
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Review from Guidestar
Rating: 1 stars  

8 people found this review helpful

A charity taking 80% of your donations for salaries and expenses. I don't think it gets much more scummy than this.

If I had to make changes to this organization, I would...

Cut salaries and give the money raised to the cause it was raised for.

Would you volunteer for this group again?

No

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Did the organization use your time wisely?

Okay

Would you recommend this group to a friend?

No

When was your last experience with this nonprofit?

2012

 
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Review from Guidestar
Rating: 2 stars  

7 people found this review helpful

It is more than disappointing that there has been no improvement since my 2011 review. In fact I would rate the 60% program expenses as deplorable. It is sad to see such poor performance as a client/ALS patient and fundraiser. For shame!

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Unlikely

How do you feel you were treated by this organization?

Somewhat badly

When was your last experience with this nonprofit?

2012

 
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Review from CharityNavigator
Rating: 2 stars  

6 people found this review helpful

Good mission, badly needed services for its clients made up of terminally ill ALS patients. Disappointing trend in all aspects and particularly in view of the superb performance of some of the chapters who are more successful in demonstrating responsible management and keeping patients at the center of their policies and practices. What is especially disturbing is that these well managed and rated chapters must send some of their hard earned revenue to the headquarters.

Unless there is significant improvement this organization does not deserve to continue as the national leadership/

i write this as a patient with ALS or, as it is also known, Lou Gehrig's disease. My servicing chapter has an excellent record.

I've personally experienced the results of this organization in...

I have had my own concerns with the leadership of the national headquarters leadership for the 6 years since I was diagnosed.

If I had to make changes to this organization, I would...

Transparency, client centricity, accountability, none of which are nothing but basic requirements.

 
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Review from CharityNavigator