The Leukemia & Lymphoma Society

Rating: 2.76 stars   41 reviews

Issues: Cancer

Location: 1311 Mamaroneck Avenue Suite 310 White Plains NY 10605 USA

Mission: The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS is the world's largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services. Our Key Priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.
Target demographics: create a world without blood cancers.
Geographic areas served: US / Canada

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Community Reviews

Rating: 1 stars  

2 people found this review helpful

The organization is one heap of a mess, with years of neglect, turnover, and is facing huge financial challenges. At the end of FY14 (June), the company announced a $30 million deficit at the national level, a regional restructure (resulting in more deficits), and severely reduced staff support across the chapters. The operations of the organization is atrocious, from finance to IT to HR, and the overall culture lacks work/life balance and fairness.

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Rating: 1 stars  

3 people found this review helpful

Cancer charity expenses sky high, June 9
The Star’s exposure of the outrageous 89 per cent administrative costs incurred by the Leukemia and Lymphoma Society of Canada (LLSC) and their attempted justification of what amounts to at best gross misrepresentation reflects a major problem in charitable fund-raising across Canada – it has become a largely unregulated big business.
In the past 25 years charitable fundraising has exploded and become a for-profit industry that spends most of its money on its operations rather than the charity they are supposed to be supporting.
But no one should be surprised by these eye-popping figures because the majority of large successful businesses work on exactly the same principle. Goods and services produced for consumers are regularly sold at astronomical mark-ups beyond their actual costs to unsuspecting customers who are never fully aware of how much profit they are paying for with their purchases.
The cure for both diseases is government-mandated full public disclosure. Both charities and businesses should be required to label or clearly post the cost breakdown of each item sold including the profit being made much like nutrition labelling in the food industry.
We label food to provide health information for consumers to make good food choices – we should label product cost information in the same way so consumers can make good economic choices as well. Then buyers could make informed decisions based on the full range of consumer and charitable offerings and the real cost of these to them.
It is time that governments did their job and required both charities and businesses to stop hiding their business behind a veil of non-disclosure.

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

shut it down

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 1 stars  

2 people found this review helpful

LLS is a multi billion dollar criminal enterprise. They engage in fraud on a daily basis.

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2012

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1 previous review
Rating: 1 stars  

see leukemia scandal dot com. Fed should begin making arrests soon.

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2012

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Review from Guidestar
1 previous review
Rating: 1 stars  

2 people found this review helpful

This website has deleted my comments regarding The Leukemia & Lymphoma Society. Sadly, this censureship denies the public the right to know the truth about where their money is really going.

Is this still America or Nazi Germany?

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2011

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1 previous review
Rating: 1 stars  

The Federal Government needs to appoint a special prosecutor to investigate what is going on at this organization. Missing funds, a CEO who uses donated monies like his own personal piggy bank.
A complete investigation must be done and arrests made as soon as possible. To see the executives pocketing the hard earned money is outlandish.

We the public deserve better. And the patients who are suffering the most deserve the most...not these criinals.

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

I worked for these criminals

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

I would help anyone but this organization.

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Review from CharityNavigator
Rating: 5 stars  

1 person found this review helpful

When I was diagnosed with Non-Hodgkin Lymphoma I was afraid and thinking the worse. My family and I did not have any idea what the diagnosis meant for the long term. My doctor and his staff were excellent and they were focused on the treatment plan. I found a copy of the LLS booklets on Lymphoma, Understanding Lab and Imaging Tests, and the Lymphoma Guide. For the first time I was beginning to understand the cancer and treatment. This information gave me comfort and confidence. I contacted the folks at LLS and they recommended online education and chat rooms. I did both. It was have been extremely difficult for me to make it through my treatment without LLS. I found their printed material easy to read and understand for a non-medical person. I also found their staff to be professional, caring, informed, patient and understanding. I would highly recommend them to anyone who needs information on blood cancers (patients, caregivers, family, medical professionals), anyone who wants to volunteer for a world class organization, and anyone who wants to donate to a charity that is extremely worthy of your trust and donation. Thank You LLS for helping me and my family, I will never forget your kindness and support. Tom W.

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

Professional staff should be evaluating and changing the organization if needed. I have not observed anything that I would recommend changing.

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

Life-changing

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

Definitely

When was your last experience with this nonprofit?

2014

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Role: Professional with expertise in this field
Rating: 2 stars  

9 people found this review helpful

I used to work for them for years and the direction the CEO is taking the organization is atrocious. Their Patient Services department has now been dismantled and taken over by Advocacy. The 3 things that matter to them: money, research and advocacy, not patients. They have now gone to a regional structure, hired regional people with no patient outreach or program experience, only advocacy or fundraising experience. At the local chapter level, where they used to hire professionals with a masters degree to do the patient and educational programs, they now hire just about anyone. The new people are rude, abrasive, real losers who otherwise would not have a job. The previous CEO started the patient services programs because he cared, the CEO there now 4 years does not care for patients and his board backs him up. Also, the head of fundraising, George Omiros is a tyrant along with his people, including one of The CEO's previous lover, who continues to be promoted. Give to another org.

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

Fire everyone at the top and bring people in who care and can inspire people

How does this organization compare with others in the same sector?

Somewhat badly

How much of an impact do you think this organization has?

Some

Will you recommend this organization to others?

Unlikely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

LLS is and always will be a charity that's close to my hard. I'm a firm believer in the great work they do. The focus is on blood cancer, but the research benefits other cancers. The treatments they've funded have often gone on to benefit other cancers.

I became involved in 2008 when my 25 year old brother was diagnosed with AML. LLS was there right away for him to help a bit financially but more importantly to help him understand and cope with his illness.

To the comments related to patient support...that is a goal of LLS. They support and educate patients and their families AND support research concurrently. That said, the focus is and should be on research because that's what will save the most patients in the future. Within patient services, I'd argue that emotional and educational support are much more valuable than a check for medical expenses anyway.

My brother lost his battle to leukemia in 2010 and I've been team captain of his Light the Night Walk team since, raising about $38,000 to date. I serve on the fundraising committee for our local walk and have had exposure to nearly every employee at the Maryland chapter. The people who work at LLS are amazing because they are so committed and vested in the cause. It's not a job to them; it's their life work.

With regards to the comments about the CEOs pay...please don't let that deter you from donating. The fact of the matter is this: CEOs at private companies make a lot more. The CEO of a nonprofit has the same skill set and he/she chose to take a considerable pay cut to work for a charity because they believe in the cause. We can agree that they shouldn't have the same pay as for-profit CEOs but at the same time, like it or not, you have to pay if you want to attract top talent. I think John Walter has done a great job as CEO since his appointment in 2008. He deserves every penny he's paid.

LLS is just an amazing charity for a great cause and I'll continue to support them until cancer is cured.

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

Continue to market the organization in a financially responsible way - more people need to know about LLS.

Would you volunteer for this group again?

Definitely

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

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Role: Professional with expertise in this field
Rating: 3 stars  

1 person found this review helpful

I felt compelled to make a comment after reading a patient's review below. She was upset that she did not receive financial help from LLS while she was going through her treatment. This organization's goal is NOT to give financial aid to patients. Their goal is to fund blood cancer research. So, while they may not have given you money to help with your medical bills, how would that have helped the thousands and thousands of others who are suffering from blood cancer? They can do the most good and help the most people by donating their money to research to find a SOLUTION to the problem...not funding medical expenses the problem creates. This is not to sound callous - this is a fact. The push for money is to fund research, it's that simple.

When was your last experience with this nonprofit?

2012

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Rating: 4 stars  

I saw the 1 star rating by Jessica Simpson whereas I give it 4 stars as the only problem I see with the LLS is that their fundraising costs are a bit high but administrative costs are very reasonable for an organization this large. Her contention that the director was getting paid 3.6% more than the director of the American Red Cross didn't sit too well for her and she has decided to cross the LLS off her list for donations.

That is regrettable!

My daughter has Non-Hodgkins Lymphoma and has directly benefited from research funded by the LLS as well as received some minor funding for medical treatment. If you look at this page, http://www.lls.org/aboutlls/researchsuccesses/, you'll see that Rituxan is one of the drugs that came from research funded, in part, by the LLS and it is one of the drugs that has helped my daughter.

I participate in a local Light The Night Walk campaign in honor of my daughter and see the direct work of LLS workers. Many of them have family members who have blood cancers so it's just not a job to them.

So please do not let one bad review for a minor disagreement stop you from contributing to one of our great charities.

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

Reduce fundraising costs, if possible.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

This is my ninth year as an active TNT volunteer, and in my opinion the organization does an excellent job. Not perfect, but none of us are. Have many friends who are Blood Cancer survivors, some who have not been able to survive. The work of LLS with patients and their families is superb, and the support of new drugs and therapies is outstanding.

My "family cancer" is pancreatic, and unfortunately there has been less success in that arena. My wife and I work with LLS in part because we see success, and also hope for cross-over to other cancers.

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

Persuade the CEO to reexamine his own compensation.

Would you volunteer for this group again?

Definitely

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

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 1 stars  

9 people found this review helpful

I contribted to this organization on and off for about 10 years. However, I recently began using Charity Navigator to screen and filter my contributions. Upon reading the reviews for LLS, I was drawn to the compensation of the director, which is at $519,000.00. Now, as a comparsion, I looked up the compensation for the director of the American Red Cross, at $501,000.00. Not only does the American Red Cross pay their director less, but the scope of services provided and scope of responsibility for the ARC cannot compare to LLS. I have decided to cross LLS off my list.

Was your donation impactful?

Unsure

How likely is it that you would recommend that a friend donate to this group?

No

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2013

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Review from CharityNavigator
Rating: 5 stars  

I have lymphoma, have attended the local LLS support group for blood cancer (the only one around), am a first connection volunteer who has called newly diagnosed patients, have attended the excellent Highlights of ASH (annual blood cancer conference) shindig in San Francisco, have visited local political representatives with the organization, and am a multi-year Team In Training (TNT) participant. I recently spoke as a patient at Stanford Hospital - where many doctors are supporting and speak highly of the organization - they have a Stanford hospital TNT team.

The local San Jose office staff are great in my opinion. The organization is the major blood cancer advocate in my area.

TNT is a good thing. I don't like asking for money and have felt guilty about benefiting from LLS sponsoring trips to potentially far flung locations. That said, most of my events are local (Wildflower), I drive to them, and sleep on the ground in a tent, but I also went to Hawaii. I also donate and my company matches, participants can donate their own $'s if they feel bad about administrative overhead. I guess 25% overhead is normal, but I'd like non-profit overhead to be 0% like everyone else, but we have to live in reality, local staff don't seem overpaid. I'm also not enamored of high CEO salaries, but I'd probably have to say that most CEO's in Silicon Valley have better salaries, but they're not running non-profits.

Best for TNT is that in addition to helping patient, it also get participants off the couch, into good shape, and significantly improves participant health. So they help patients, raise money for research, whip participants into shape, etc. What's not great about that!

One of the other reviewers is correct, you can't swing a dead cat in the Bay Area without hitting a TNT'er. Go Team!

They've improved my life. I brought my entire family to Hawaii (on my dime of course) and hence even my wife and kids are heartier, healthier, and sexy as hell:-) Now my 16 year old son is biking with me and will go to Wildflower (I'm paying) with me this year. He's wearing an old TNT jersey of course - his only biking top!

I've been a TNT honoree (cancer survivor) every year I've participated. My blood cancer isn't curable, but it seems to be stable. I hope to participate for many more years.

I'm not a charity expert, but I have worried about this, did my own investigation (e.g. reading all these reviews) and my take is:
* LLS is as about good as most charities from an overhead standpoint
* Of course training and sending loads of people to events is overhead, but it's really good overhead.
* Most of my friends are going to donate to charity (Go Friends!), LLS is as good a choice as any

I judge things in life by the rule would it be good if everyone did it or no one did it. By this rule littering is bad, spending more time with your children good, and TNT good. If everyone did TNT we'd all be in better shape, live longer, and health care costs would go down - that's before any of the funds raised go to research and patient services.

It's not easy to get fat Americans off the couch. I know my couch is pretty comfortable. As soon as I ask my family/friends to donate to my TNT fundraising my fate is sealed, I have to do it. That's the kind of positive peer pressure we all need. I ran to work today, without my TNT event looming over me I would never have done that. My big, fat, gas guzzling SUV sat in the driveway all day. I should park it on the couch:-)

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

A lot

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Review from Guidestar