insensitivity and lack of support
Posted by Joy  |  November 2, 2009 5:51:51 AM

L&LS is useless. I'd like to know how much if any $$ go to research. Considering their fundraising clout, it was appalling that the only presence they had @ Children's Hospital LA was a small wall rack of pamphlets in the parent's kitchenette on the hema/onc floor. When our 17yo daughter died of AML,friends & family gave thousands to L&LS. We often didn't get notified of the donations so we couldn't even thank people. I had to phone for updates on giving, which seems an unnecessary inconvenience to a grieving family and they were never able to total what was given in her memory. We constantly get form letters soliciting funds which never acknowledges that we are a family who lost a child to Leukemia and that her death generated a boatload of donations. Don't they have a computer database? How hard would it be to flag that data point and send a nuanced more sensitive letter. I entered TNT but quit. It was a cheerleading squad that encouraged speed, travel and fun more than fundraising

TNT
Posted by gusty13  |  October 16, 2009 5:42:23 AM

I just wanted to put my 2 cents in....I was on TNT towards the beginning of this year and dropped out right before I had to confirm for travel. I don’t like quitting something but I just didn’t feel right about it. I don’t agree with taking money from the organization for my travel arrangements (airfare, lodging, etc). The people that run in the events are good people and want to help and they work hard at raising the money. I am not saying what they are doing is wrong but it was just wrong for me. I don’t agree with bashing the runners or coaches they really are trying to help. What I think TNT should do is when someone wants to join they pay for their own race entrance fee, their own travel and lodging (if needed) and they pay an application or members fee of some type (call it whatever you want). Then the application fee can go to salaries, advertising, corporate expenses etc. and the raised money goes directly to LLS. That way when you are trying to raise money none of it goes to your travel or corporate expenses. That was my big issue when I was on it I couldn’t ask people to give me any amount of money because I knew it would be going to some of my expenses and corporate expenses…..again, just my 2 cents

response to jm1989's post
Posted by Robin  |  October 8, 2009 6:08:05 AM

I am a Hodgkins survivor and I've never asked anything of the LLS.

Actually, that's not totally true. I did asked for a them to give survivors and caregivers a new board they could use to provide support, but instead they put out something so convoluved they drove off most of the old timers, deleted years of experience and turn the 'community' into a marketing tool.

While that vent seems unrelated I think it the same logic behind giving up to $5000 to those who really need it, to $150 to anyone who asks. Now they can advertise they support so many more people, when that support has been diluted to next to nothing.

I never asked for money from the LLS because I haven't drained all my savings...yet. There are people who need every penny they can scrap up to save their lives, and their families.

As for cutting out support for Follicular, my guess is they don't turn out to be good future donors. It's probably another reason for the small gifts to more people. Through out a handful of crumbs and you'll get more nibbles than tossing a full loaf. A few of those nibbles with feel indebted and donate back more than the $150 over time.

Finally, it took 18 days into September for the LLS to remember it was Blood Cancer Awareness month. Or as see it, LLS Awareness month.

With them survivors are nothing more than bait to hook donors.

Note, I'm talking about Corporate as I'm sure those in the local office who actually deal with survivors have more compassion.

TOTAL LOSS OF FUNDING!!
Posted by janeg  |  September 14, 2009 6:03:56 AM

True they give you 150.00 not much considering we were promised $5000 to help pay medical bills and after we submitted all our receipts were told "sorry funding for follicular lymphoma has been closed indefinately". Like one lymphoma is worse than another, they all stink and all put a huge financial impact on the family. We were counting on that money to help pay off medical bills and offset our $40.00 copays everytime my husband goes to the cancer center, which was about 3 times a week for quite awhile. Now we face a donor stem cell transplant and the costs that come along with that. Thanks for nothing. Like I said before maybe the CEO could cut his salary to help the patients that really need it.

why such a drastic cut to patient services?
Posted by jm1989  |  September 8, 2009 6:43:15 AM

from the numbers I have seen as a board member the number of people requesting help has increased so as to not turn anyone away they cut the amount received back to 150 but at the same time they took away the paperwork and income requirements. so in reality, yes they did cut your benefits but they spread them out to help as many as possible.

FUNDS DRASTICALLY CUT TO PATIENTS!
Posted by marge  |  August 18, 2009 6:08:01 AM

I have had leukemia for over 10 yrs. The LLS has 750.00 for each pt. who needed money to dfray costs of treatment. About 7 yrs. ago that amount went down to 500.00. I received notice earlier this year that amount patients can receive is 150.00. I not needed money each year, but have used it a couple of years when treatment was especially expensive. I cetainly would find somewhere else if your really want to see patients get help. This org is rife with high paid muckety-mucks who show up at mtgs around the world. Not much bang for your dollar if you ask me. There income still gretly out paces their expenditures--why such a drastic cut to patient services?

funding closed
Posted by janeg  |  August 12, 2009 8:45:19 AM

My husband has follicular lymphoma, we just received a letter stating that funding for his cancer has been closed. This is so upsetting since their funding could really help us offset our spiraling medical costs. Too bad the CEO cant cut his salary to help families in need.

Donate somewhere else
Posted by Jenna123  |  August 4, 2009 5:54:12 AM

I agree with Kerry, except I doubt even 70% goes to the cause.

Financials state that Admin is over 9%. The TNTers have confirmed that 25% goes to fund their marathon or triathlon or whatever.

So for every $100 "donation", at most $65 goes to the cause. I bet less in actuality too.

That's sad. I say donate your money somewhere else.

Be careful
Posted by OMG  |  July 29, 2009 6:46:26 AM

Be careful and make sure you know where and how your money is being used. The coporate staff salaries are very high for what they bring to the table.

TNT "Donations"
Posted by Kerry  |  July 22, 2009 5:22:17 AM

I used to donate to TNT but now choose to donate money and time elsewhere - Charities that get a 4 star rating in the efficiency category - vs. the 2 stars that LLS gets.

Instead of sending an email that says "I'm running to cure cancers. Please donate to help me find a cure", it should read:

"Give Money.. For every $100 you give, only $70 will be given to patient services and research. $5 will help cover admin costs, including the CEO's half million dollar salary. and $25 will be used to buy stuff for ME and MY marathon experience"

It makes me laugh that TNTers say, "I'm training to cure cancers. I will dedicate the time to train and run the marathon, but I need your help to find a cure".

Ummmmmm, what does your running have to do with finding a cure? No, the running is for yourself - it's your own personal goal and feel-good accomplishment. It does not cure cancer. If you wanted to put time in to cure cancers, volunteer an hour a day at the labs or offices so the overhead for research and patient care isn't so high. That's a little more helpful than running, don't you think? I'm not saying don't run. Running is good for you. But don't convince yourself or others that your hobby is somehow curing cancers. The only people helping the cause in this case are your donators, not yourself (unless you donated to yourself). And donators probably don't even know that only 70% of their money is going to the cause.

TNT vs LLS
Posted by dieselbug  |  July 2, 2009 11:08:53 AM

Team in Training is a major fund source, but no means the only one. Pasta for Pennies, Light the Night and other contribute greatly also. Having been involved with TNT at a local level for almost 10 years (as participant, mentor and coach), I know the ratios of cost vs funds raised and where the money goes. TNT has strict guidelines on the funraising totals - the numbers are determined based on (estimated) cost per participant and the fundraising total is set at 4 times the cost level (costs include staffing, travel, entry fees etc). The money goes to patient services (to assist with covering costs of blood transfusions, for example) and independent research into cures for Blood Cancers. The big success story in the last 10 years has been Gleevec - s drug that the researchers have stated would not or could not have been developed without the funding provided by LLS. This drug was originally developed to treat a specific type of Leukemia (CML) and has since been found to be effective with other Cancers - http://www.cancer.gov/clinicaltrials/digestpage/gleevec As a fundraising organization, TNT is very effective in what it does. I know I would not have given my money, time and effort to the cause had I not received a mailer suggesting I join the local chapter to train for a bicycle ride back in the summer of 2000. Since then, I have trained many riders who have raised more than $500,000 total in the teams I have ridden with, and that number alone would be enough to fund 4 research grants to help find a cure. They raise a lot of money, and they spend a lot of money helping work towards a cure. It can't come soon enough for me as I have lost too many friends and family over the years to Cancers, and my involvement will not waver for time to come. My experience of the ratios of funds raised vs costs applied do not seem to match those identified by Charity Navigator so maybe the "truth" lays somewhere in between. LLS does good things for millions of people.

Funding and the balance of where it goes
Posted by SuDaChiWa  |  May 7, 2009 8:36:28 AM

I'd like the money to go directly to research, to helping survivors and families dealing with loved ones with cancer; I'm not interested in lining pockets, nor in winning some fund raising award; but someone has to run the business, and some people like those plaques on their walls I guess. I do think LLS goes overboard with administrative costs, and all those "free" shirts and other goodies we don't really need in order to support our friends and families. But, people like souvenir's, and wearing the shirts does bring people's attention to the need for a cure, to the organization, to the fact that people die of blood diseases and there's not a cure yet. We all have to remember the balancing act between running a business, be it a charity or for other types of services or products we all need or want. Don't buy it if you don't want or need it. Fund some other organization if this one makes you mad. But recognize that It is a business that offers a service to many, as many ways as possible. The awareness and education and help to people with cancer is needed. Don't forget we're talking about human life and the desire to keep the vitality going, the care, and the people we know and love... alive. It's not about us, it's about them. Keep it sweet folks. I want more of my donations to go more toward helping those who need it, and less toward running the business too... but at least one friend of mine has benefited from LLS, if she lives a long and blessed life... it'll have all been worth it!! My two cents.

SALARY
Posted by rlw31229  |  April 13, 2009 5:46:53 AM

$5OO,OOO IS TOO MUCH FOR ANY CEO.NO MORE DONATIONS FROM ME, EVEN 'THO I HAVE CLL.

TNT Expenses
Posted by jpmgood  |  April 6, 2009 12:33:27 PM

I am training to do a local triathlon with TNT. I have committed to raise at least $1400 and expect to raise at least $2000. TNT pays for my entry fee ($60.00), Tri-Suit ($100.00?) and two meals ($50.00). TNT is also providing fundraising support, although that's of no direct benefit to me. Their total costs for my participation in the event and fundraising are $350 (25% of $1400). They are going to get back around $2000 on their investment. Not a bad deal for LLS! Although I've received around $200 in benefits (as described above) and free coaching, I've actually paid out more: e.g. $75.00 registration fee, $105.00 contributions, $50.00 out of pocket fundraising expenses. It would have been cheaper for me to pay my own entry fee, buy my own tri-suit and join a triathlon club. Sure, I could have asked a few friends to sponsor me and given the proceeds to some other charity, but I wouldn't have raised anywhere close to the $1650 profit that LLS will receive through my participation in TNT. BTW, in case you haven't tried it, raising $2000 takes many hours of hard work! Some of my teammates did not solicit donations, but they or their families contributed $1400. Others held garage sales or performed services to raise money. Were they not fundraising for TNT, they could have kept the money themselves or simply not bothered. So I bitterly resent insinuations that TNTers are getting a free ride on the backs of their donors. It has been suggested below that TNTers should pay all their own expenses. Sounds fine, but if that were the case, TNT would not be able to find many people willing to commit to raising such large amounts of money. TNT provides just enough incentive for people to sign a contract committing them to raise (or pay out-of-pocket) several thousand dollars within a few months. If all they offered in return was the team training, few would make such a commitment and LLS would be a lot poorer because of it.

Ties to Drug Companies
Posted by jpmgood  |  April 6, 2009 6:11:56 AM

I would expect that any charity with a significant portion of its expenses designated for disease research is going to partner with major drug companies to develop new drugs to combat that disease. Charities don't own research labs capable of developing new drugs on their own. So I would expect that a portion of charity donations is going to be received by drug companies in return for their research. It would be nice if drug companies developed drugs for free, but we're in a capitalist society and drug companies exist to generate profits for their shareholders. Their profits "soar" when they are successful in developing new drugs that really work, not as a result of receiving investments from the likes of LLS (which are very small compared to a large dug company's revenue). When LLS gives funds to a drug company, it is probably to ensure that the drug company continues to develop drugs to combat blood cancers, even when there are no immediate profits from doing so. I don't see anything sinister in that. The fact that the CEO previously worked at Bristol Myers Squibb is probably not coincidental. I'm sure that his responsibilities include ensuring that research dollars are invested wisely and his background may assist with that. Given recent history at corporations in many industries, it is possible for illegal/unethical behavior to occur almost anywhere, so I agree with the last contributor's suggestion to do our homework. But it's also easy to come up with theories of wrong-doing based on "suspicious facts" that with further thought, may not be that suspicious after all.

CEO Ties with Drug Co?
Posted by bbOwl  |  March 23, 2009 6:14:35 AM

Imagine this all Team in Trainers - On the LLS website, the CEO that they have listed, John Walter, previously worked at Bristol-Meyers Squibb. Is that coincidental? What if our donations are going straight to the drug companies to fund research so that the drug industry can make cancer curing drugs for profit? Then as donors, would we be donating money to LLS, or to someone like Bristol-Meyers Squibb? They no longer have to pay for research and profits soar through the roof because of it. They just coordinate with LLS and take the research from LLS. This scenario is rampant in our early 21st century. Highly common - investment co's, bankers, auto industry...

Guys like the LLS CEO and top dogs at the drug companies are walking away with a lion's share. Anyone who's come to this site shouldn't doubt that. There is a lot of money going through this channel. We need to educate ourselves before we give - that's been my lesson, and only after raising $2k for LLS. Family members have gotten me to think, and as I look behind the scenes, what I'm seeing doesn't provide comfort to me. Good cause, bad characters? I can't be sure. Let's do our homework.

Phone marketers
Posted by ramette  |  March 12, 2009 10:33:18 AM

I agree with ktischler above. I was contacted yesterday by a telemarketer who wouldn't take no for an answer. She was very obnoxious. Kind of soured me on the whole organization. I wrote and asked to be removed from call/mailing lists, and I will think twice before giving another donation. Sad, right? I would rather have my dollars go to an organization that isn't going to harrass me and shake me down every so often.

TNT Expenses
Posted by Trisha  |  February 11, 2009 6:45:48 AM

I like the approach of CGoetz.

TNTers should just pay for their own hotel, airplane ticket, and race fees instead of using donation money.

They still get the incentive of training with a team, having coaches, etc. If they really want to "give" to the "cause", and that is what's motivating them, that should be enough incentive.

Executive Pay
Posted by albee  |  February 4, 2009 11:03:07 AM

I find it interesting that executive pay is greater than 100% higher than the Chief Justice of the Supreme Court and the VP of the United States.

Why TnT works
Posted by jim  |  January 14, 2009 10:21:04 AM

I became involved in TnT last year, running the Nation's Triathlon. 700 racers of the 3000 were TnTers and they raised over $3 million. Yep, we stayed in a hotel, but many of us would have raised much less money if we were not showing our commitment to our donors by busting our bodies to prepare for the race. Could expenses be reduced? Sure. And I agree that the Society should be looking into ways to stay/travel more cheaply. But if the hotel rooms and the free training (coaches are NOT paid) gets more people raising more money, then the "expenses" are, perhaps, justified. TnT did not pay for my bike, or my running shoes, or my food, or anything else during 3 months of hard training. And my donors appreciated the race part of the project. No way I raise $9000 if I'm just sending out an e-mail asking for contributions. My experience is that they could save some money with more efficiency, but the bottom line is that the organization is very successful at providing direct grants to researchers and to patients. Just as an aside, the American Cancer Society has a worse ratio.

TNT Expenses
Posted by CGoetz  |  December 22, 2008 6:36:23 AM

I am fortunate enough to be able to self-fund enough to cover my TNT event expenses. None of the donations I solicit will go to cover any of my expenses or provide a "free" trip for me.

I see two advantages of these types of programs. First, they can be awesome experiences for those who participate, a months-long time of working for a common cause, a time that promotes healing for the soul while raising money for the cause. Secondly, they bring in donations that would otherwise not be given. A simple appeal for donation would not bring in the gifts that these events, with their personal commitments, do.

regarding maris' posting from 8/19/08
Posted by bd  |  December 4, 2008 8:13:27 AM

true, you can designate your personal money go to program expenses but in reality, it's just an allocation. it doesn't subtract from other expenses, including the ceo compensation. the charity still works on a budget and the ceo still gets paid what he/she gets paid.

TNT and donations
Posted by Amanda74  |  November 11, 2008 6:41:07 AM

First of all, let me make it clear that I do think that the salary for the CEO is unreasonable. I don't think that anyone should become rich from their work in a charity.

With that being said, this is my first year participating in TNT. I chose to participate in this program because it helps not only with research, but it directly helps people stricken with blood cancers with expenses involved with getting treatment and such.

Lastly, anyone who thinks that people such as myself are only participating in order to get a free ride to a race is being extremely unfair. If I wanted to race and not try to raise money for a charity, I could easily do that. I have already contributed a lot of money out of pocket to help meet my required minimum. My husband and I frequently donate time and money to charities such as this. So please don't be so quick to pass unfair judgement on the participants. This program involves a lot of time and hard work that benifits the charity.

TNT Donations
Posted by Jenna123  |  October 3, 2008 5:34:14 AM

I need to respectfully disagree with PatGib on several of his points.

First, the fundraising expenses shown for LLS is for the society in total. If LLS received their revenues through flat donations instead of TNT, you can be certain that their fundraising expenses would not be over $40M (!!) - and a lot more can go to cancer programs.

I realize a participant's fundraising requirement is set by how much their race costs. So if a participant decides they want to do an event on the other side of the country, they need to raise more because their airplane ticket costs more. So it's like asking their friends, "donate more to TNT, because more donations need to be spent on me"

If $40,000 is raised, with the way LLS spends it's money, realize that more than $10,000 is NOT going to cancer programs.

TNT fundraising is very different from many other organizations. I've been committed to organizations that don't even spend a penny on lunch or a bottle of water for their volunteers - so more can be used on programs.

The LLS efficiency rating on the site speaks for itself - 2 out of 4 stars. I want my donation money and time to go to a 4-star organization.

I realize TNT increases the popularity of raising for this charity, so that's why they have such high revenues. It's just a shame that they take advantage of this and squander so much of the revenues away. Many other charities would kill for $40M - or just a fraction of that - to do real charity work.

Lastly, the hard work of the TNT-ers is diminished by the fact they need a free race ticket to do their volunteer work. I believe if they were truly moved by the cancer patients they met through the program, they wouldn't take the patients' money to use on the race, because as they shold know, every dollar counts when it comes to patient care and research.

Donations through Team In Training (TNT)
Posted by PatGib  |  October 2, 2008 12:13:19 PM

I would like to respond to comments regarding donations made to individuals who are participating in the Team In Training (TNT) program.

First, the percentage of a donation to support a TNT participant that goes to the cause is the SAME percentage that would go to the cause if you made a flat donation to the Society. Even though TNT does cover expenses like travel, hotel and race entry the amount participants need to raise is set at a level that maintains that percentage.

Second, while it seems like you're paying for someone to take a trip and run a race I believe that unfairly diminishes the hard work and effort these individuals put into raising thousands of dollars for a worthy cause.

As current and past participants my wife and I can assure you that had we not signed up for TNT we would not have raised over $40,000 for cancer research, patient aid and education.

The 30,000+ people who sign up for TNT each and every year are no different than volunteer fundraisers in any other organization - the money they raise is needed and it goes back to the cause.

If The Leukemia & Lymphoma Society can motivate individuals to raise money by offering to pay for airfare and hotel and the Society can still maintain the percentage that goes to the cause (which they do) then I don't see what the problem is.

All I know is that if it wasn't for TNT we would not have been raised the money we did, we would not have met some incredible patient heroes, and that much LESS money would have gone where it's needed. And I'm sure we're not alone in that regard.

Bottom line - the program is successful, the Society maintains their percentages, the patients and their families are provided with hope, more research is done, more treatments found, and more people are saved. And isn't that what matters?

Thank you for your time and God bless.

Patrick

CEO Salary
Posted by AndreaS  |  October 1, 2008 12:12:40 PM

One other thing to think about when looking at CEO's salary is the percentage of expenses that it falls under. CEO of LLS is at 0.2% of expenses. I just looked at another CEO where the over all salary was less, but it was 5% of the total expenses. Not say that 1/2 a million isn't ridiculous, but it's something to keep in mind.

% of Revenues to Research
Posted by AndreaS  |  October 1, 2008 11:14:45 AM

I've seen a lot of questions on this board about dollars going to research. It is my understanding that 75% goes direct to research and the remaining is for patient care, administrative, and fundraising costs.

Team in Training - Poor use of Donations
Posted by Jenna123  |  September 30, 2008 12:54:39 PM

One of the main fundraising arms of LLS is Team in Training (TNT). I do marathons myself, and know many friends who have run marathons for TNT and solicited for donations. I've given a couple thousand dollars to TNT over the years to these friends. Now, I feel I was very ignornant to do so.

Notice how high LLS's fundraising and admin costs are. LLS and TNT uses donation revenues to pay for each participant's race fees, hotel room for the race, and even airplane ticket! I'm sure there's also smaller amounts used to help train participants for their endurance event as well.

I think that is ridiculous. If the participants of TNT truly cared to raise funds for cancer, they would think twice about running the race, staying in that hotel room, and going on that airplane ride that was paid for using dollars that should have gone to cancer programs instead. If they really wanted to help instead of getting a free ticket into a race, they would solicit donations for a cancer charity that spent less than 10% on fundraising+admin (there are a lot), pay for their own race, and join a running club for their training.

complaints about your donations
Posted by Maris Edgar  |  August 19, 2008 5:39:44 AM

All complaining about where your money is going: If you designate your donations as being only for program expenses, your personal money cannot pay the CEO.

Stats speak for themselves
Posted by Ontime  |  August 18, 2008 10:43:24 AM

I was recently asked to be a volunteer in my neighborhood due to the fact that when contacted by phone this was a charity that I would feel comfortable reprsenting on behalf of my grand father that I lost to Leukemia in 1984. Before sending out the cards with the request for donations I checked the organizations stats...and I was not impressed; but I did take into many considerations the regional location of the branch and the over-all program allocated funds, and they did not stack up "so to speak" in my personal oppinion. The ratings speak for themselves and no-one can argue the chart nor the percentages; they do speak for themselves and I decided that the location where I live; which is in NC: which clearly shows the the compariable efficency that this organization should be running on, and surely does not. Diffently something needs to be addressed within this organization; key word "non-profit" organization. Personell so deserve to be paid and effective and efficent salary; but in these astronomical price ranges, I think not. I being a volunteer do it for no profit at all--except to find the cure some day, that's what it's all about. Split the cost of those Admin. salaries and operational expenses and I believe this organization will be able to make a fantastic come-back regarding this well deserved cause. Respectfully, Ontime

Upset with This Charity
Posted by TXSun  |  July 22, 2008 5:47:50 AM

I had given to this charity for years, as my mother died from lymphoma 10 years ago. Yet, in recent years, their telemarketing pitches had grown more intrusive, aggressive, and generally rude. I finally had to hang up on them during this year's drive, as they were so obnoxious.

Couple this with the ridiculous amount of the CEO's obscene salary -- I'm going to try to find somewhere else to donate where their efforts could go directly into research to cure this horrible disease, rather than to continue perpetuating a CEO's grand lifestyle.

LLS PRESIDENT MAKES MORE THAN US PRESIDENT !!
Posted by Tom P (CT)  |  July 21, 2008 5:58:39 AM

Dwayne Howell apparently makes half a million per year? Get out of charity, Dwayne, and get into private enterprise!

CEO Salary (Peppiegirl)
Posted by eagle379  |  July 17, 2008 5:37:20 AM

Peppiegirl,

Please visit the Charity Navigator FAQ link below about CEO compensation. Also, consider that of the LLS yearly revenue that amount is less than a quarter of a percent of that total and only 10% of that is for administrative costs.

http://www.charitynavigator.org/index.cfm?bay=content.view&cpid=484#25

$$ given to President, CEO.
Posted by peppiegirl  |  June 24, 2008 6:07:12 AM

I am APPALLED that the CEO's of LLS are being paid such staggering $$ amts.!! A classmate from my school and the mother of my closest and dearest friend died from leukemia in the past 2 years. I've been giving money to LLS in their memory. Now that I know the kind of money that is going to the Pres. and CEO, I'm not so sure I want to anymore. I think I'll send my money to Hershey Medical Center, Hershey, Pa...instead. That's where they passed away. There is NO REASON for a CEO to be paid $494,867. :( Shame on you, Dwayne Howell !! What really makes me sick is that the place where I was working at the time Dwayne was CEO, was raising money for LLS. Infact, I was the biggest fundraiser. I was so proud of that fact. Not so much the fact that I was the top fundraiser, but that I raised about $400. for LLS. I have one thing to say to the board of LLS..... lower the salary of your Pres. and CEO.

leukemia
Posted by sherrycream  |  May 26, 2008 6:51:16 AM

my gramdpa died of leukemia back in 1985 and when i see at stores where you can donate to the leukemia foundation i try to give what i can in my grandpa's honor. i am disbaled and on a fixed income

Leukemia & Lymphoma Society
Posted by Tiamet  |  May 23, 2008 5:52:42 AM

They are updating their software site now, which is not an easy task. They were the only organization that would provide financial assistance for co-pay for medicine and hospital/doctor costs. Considering the financial help they offer, the requirement that you need certification of your diagnosis is a minor issue. They have been very friendly, quick to respond to questions and to help. Also remember that LLS was formed by joining two separate groups. I would expect there to be some hiccups along the way. But look how far they have come and they are just beginning! They have and will continue to have my support. This is one organization we can not afford to lose.

Everchanging Nonprofit Landscape
Posted by matthewzachary  |  May 23, 2008 5:51:25 AM

After WorldCom, Enron and Tyco, we're living in a different world with regard to consumer advocacy, transparency and accountability, which is now trickling it's way over to the nonprofit sector. Captiousness, jaded skepticism and challenging the status quo is a good thing because it fosters smarter consumers and encourages better dialogue with the nonprofit sector. It's good to ask questions and find out the answers you need to make the most objective decison with regard to where you choose to give but also where does the money go. LLS, like any other nonprofit is under the microscope with consumer watchdog groups so forums like this bring a great deal of value to both sides of the equation. In my experience, as the founder and Executive Director of a startup nonprofit (http://i2y.com) which has successfully partnered with LLS on two occasions through unchartered waters to benefit young adults with cancer, I can attest that it should be recognized that local and regional affiliates may have their own autonomous accountabilities but it is the national office which should and can provide you with the answers to the pivotal questions you seek. So far, it's been a pleausure working with them as they are much more open to playing in the sandbox and looking 10 years ahead than any of the major societies and pink factories.

Survivors are secondary
Posted by Robin  |  May 19, 2008 6:06:51 AM

I'm also on the LLS board watch them take credit for their message board, when it's the survivors and caregivers on the board providing all the support.

I have called White Plains to complain, and was told corporate is aware and 'sorry', this is how they want it.

They have refused to address the needs of the survivors/caregivers on the support board while purchasing new hardware and software to create social community, http://community.lls.org/index.jspa for fundraisers and excluding the more active support community from http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?

I beleive the LLS claims 20% of money donated goes to administrative cost.

Is that 20% of a dollar I had them directly or an average.

If I give a dollor to Team In Training, how much actually gets to programs? Do they count my entire dollar or claim as only part of that donation will go toward race registrations, travel expenses, lodging expenses and other TNT expenses.

I have asked specifically why they don't do awareness and was told leukemia and lymphoma don't have symptoms to look for. The only awareness they generate is for their own organization and fundraisers. Next time you read one of their press releases, see how little is about blood cancers and survivors, and how must is about the Society.

Last year they 'forgot' September was was Blood Cancer Awareness Month. Think anyone forgets what October is?

I'll put my money behind and organization that actually cares about people suffering from cancer and not just selling a 'product' that happens to be fundraising.

Patient Support lacking
Posted by Lou123  |  May 15, 2008 11:12:53 AM

The LLS.org's "Discussion Board" is hosted on archaic software that appears to be in the throes of demise as forums are taking double-digit minutes to load. Requests to the admins appear to be ignored or the answer of 'use a different browser' is given in spite of a number of users reporting the same awful load times regardless of which browser is in use.

Rules have been implemented which have greatly reduced the value-added nature of interaction that these Discussion Boards used to offer. Entire threads have been deleted without warning and were missed terribly (photos of members, some of whom are now deceased, threads representing countless hours of interaction and peer support, etc.). No longer are posts to include mention of doctors by name or hospitals with any opinion or sharing of firsthand experiences of treatment, even if those are positive observations. No photos are allowed unless one pays the fee to post their photo and story on the LLS's 'Mosaic'.

The LLS staff that have interacted with patients regarding the Discussion Board have left a lasting impression that the LLS really mostly cares that you send your donation and they'll make upgrades to other areas of their online presence rather than facilitating patient support that fits the needs of many already seeking it.

The LLS touts the patient-to-patient interaction as a fabulous benefit 'they' offer to the patients, however they refuse to assist in making the communication easily accessible by upgrading from software that was obsolete in 2004 or 2005.

New 'blogs' or online communities have been touted as a terrific online support also but the registration requires a certification from the patient's doctor confirming the cancer diagnosis. This may be the future of online support groups but it takes what was once 'easy and open access' and puts it behind closed virtual doors and would, I believe, eliminate entirely those who are concerned about a potential diagnosis of cancer.

Aggressive phone calls
Posted by heartland  |  April 30, 2008 5:58:16 AM

This organization calls me all the time. I've never contributed and don't intend to. They don't leave messages, and don't identify themselves on caller ID. Very, very annoying to be bothered so often, several times a week.

Phone marketers
Posted by ktischler  |  April 24, 2008 1:12:59 PM

On april 21st 2008 at 8pm a telemarketer by the name of Sharon Simpson called my elderly parent's home asking for support.Being their daughter and legal caregiver I explained they gave thru Relay for Life and that they had in the past attempted to do the neighborhood drive for the leukemia society but that they were not interested. This woman argued with me for 10 minutes and I finally had to put my poor mother on the phone and she griped at my mother!! My mom told her the exact same thing I did. She was pushy, harassing, and way overstepped her boundaries. I wonder, do the tele-marketers they hire work on commission?Do they expect 70 year old people to walk up and down the roads asking for donation for the L&L society?

I am a board memeber and the wife of a survivor
Posted by jm1989  |  April 9, 2008 10:17:42 AM

You have to look at this charity as one of the few left who does patient support. They help families with Co-pays and much more. This is where some of that money is going. They try to help the most people in as many ways possible. if you have questions please contact someone at www.lls.org

Percentage of Revenues devoted to Basic Research
Posted by eagle379  |  January 9, 2008 6:12:32 AM

You can find current numbers for research funding and how fundraising dollars are distributed at the Society's website at www.lls.org

Percentage of Revenues devoted to Basic Research
Posted by Tellurian  |  December 24, 2007 10:53:43 AM

I have contributed to this organization since my dad died of leukemia some years back. However, I am currently questioning how an organization with current revenues of in excess of 200 million dollars a year has only managed to fund 486 million in research since 1949.