The Leukemia & Lymphoma Society
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March 21, 2013
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:-)
More feedback...
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
3 people found this review helpful
June 5, 2012
3 people found this review helpful
I was incredibly disappointed with this organization. I have ALL and have participated and fundraised for this group and will NOT continue to support this organization. When I relapsed after my first umbilical cord transplant, it was such a burden on my family that I sought out assistance through their website for the "Copay Assistance". I was told "you have the wrong kind of leukemia. There is no funding for that type." Are you kidding me? I didn't get to choose my "type" of leukemia. After being told this by their main headquarters, I called the local branch and received was told to apply for the $125/year they offer to patients. Since I was not able to receive disability (didn't qualify due to I was a stay at home mom for 12 years trying to raise my kids and told we made more than the $1000/mo allowed to qualify). I have not personally seen any of my cancer friends "helped" from this organization. I've only seen the money flow in from all the Team in Training and fundraising for all their events. I, being a leukemia survivor, do not see that they help the patients as stating they do. I've gone through this twice and was deparate (I am a very proud person that would NOT ask for help if I do not need it and would prefer not to ever need it) at the time I was trying to reach out. I would give to the local blood banks or to the American Cancer Society or to a smaller non profit doing good in the community. Every time I get a call from them for fundraising, I explain in detail WHY I cannot support their organization. I wish I could. I am currently working with my local blood bank and will give back to them. I see the benefit of the works of the blood bank far more than the LLS.
More feedback...
How would you describe the help you got from this organization?
None
How likely are you to recommend this organization to a friend?
No
How do you feel you were treated by this organization?
Badly
When was your last experience with this nonprofit?
2011
September 19, 2011
2 people found this review helpful
I am a non-Hodgkin's lymphoma survivor, the third in my family. I am grateful for the drugs that LLS has helped to develop but I question the absence of prevention in their mission statement. They have pulled risk factors for blood cancers from their website. And my third concern is that they hold fundraisers in toxic minefields of herbicides, pesticides and fungicides. In Orange County in California, they parade thousands of survivors and genetically-at-risk relatives past a Major League Baseball field while dozens of chemicals are still in their toxic half-life state. Hurray for the treatments the help create. Shame on LLS for ignoring the science on the chemicals that put people at risk for blood cancers. Where is their next fundraiser, Fukushima, Japan? And shame on the CEO salary. He can get paid that when he is done preventing and curing blood cancers. For now he is failing at his job by putting more people at risk for blood cancer.
The Great!
I've personally experienced the results of this organization in...
I have benefited from Rituximab and Zevalin which LLS helped to develop. And I have witnessed the LLS walk at Angels Stadium where no one was warned of the health risks from the exposure to pesticides, herbicides and fungicides.
Ways to make it better...
If I had to make changes to this organization, I would...
I would cut the CEO salary in half. I would add prevention of blood cancers to the mission. I would add information about envirnmental risk factors back onto their website. I would ensure all fundraisers were held in healthy environments that didn't put the participants at risk.
5 people found this review helpful
July 13, 2011
5 people found this review helpful
This Charity Honestly doesn't deserve any stars in my opinion. They used to give patients $500 a year towards transportation reimbursement and now it's $150, this is a 75% drop!! And yet they are still raising more money then they did last year. While I understand that there are more survivors of blood cancer now, then there were perhaps 3 years ago, the fact remains that not all of them need this additional help.
I was extremely upset to also find out how much the CEO John Walters takes in as a salary! $558,000 is exuberant and if he really wanted to aid those of us who have or have had cancer, he would take a lower salary and use the excess money to help us all. Unfortunately this organization has turned to greed and what they can get out of others!! Calculate how much he and his board make every year! Do they really need all this money?
I refuse to support this cause and if you are thinking of helping them, I suggest you look into the sites that provide you the facts!!
www.leukemiascandal.com
www2.guidestar.org
www.charitynvigator.com
Research the Charity Prior to donating!!! And make sure you know where the money goes, because God forbid you or someone you know get's diagnosed with this disease, you will see the truth of how little assistance you will get from this charity!
The Great!
I've personally experienced the results of this organization in...
When I volunteered for the charity and realized the money wasn't going where it should! IN ADDITION, while i understand that Team in Training is a fundraiser for this charity, I'd like to know where those funds raiser are on their annual report. In addition I'd like to know why they can't allow survivors to attend the event without raising money. I was told I had to raise $5000 in order for me to attend this event!!! Ummmm No! Survivors should be allowed to attend, whether they raise $$ or not!
Ways to make it better...
If I had to make changes to this organization, I would...
Fire the CEO and Board, get some new people in there that won't put their sights on how much money they can get but rather on how they can help these survivors and their families!!
July 30, 2009
The NYC chapter has made my ongoing battle against AML a less-stressful and more hopeful one. I have been a grateful recipient of financial assistance for transportation and an inspired teammate of Team in Training. Rock on LLS!
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the positivity
The kinds of staff and volunteers that I met were...
energetic and friendly
If this organization had 10 million bucks, it could...
further it's mission to cure blood cancers
When was your last experience with this nonprofit?
2009
January 29, 2009
I have participated in TNT twice now- once for a triathlon and once for a marathon. Both experiences were really unique and really wonderful. I achieved levels of fitness and CONFIDENCE in my fitness that I never dreamed possible- this is something I will never again lose. I now know that I can. I was a participant with several loose ties to cancer, but no really strong ones. Still, training so hard for so long for such a focused, poignant cause involved me in a way I hadn't anticipated. When I was a summer camp counselor, my 14 year old camper was diagnosed with Non-Hodgkin's Lymphoma, and a year later on the first day of camp I had to sit all of her friends down and tell them that she had died that morning. While training for a triathlon I read excerpts from her personal journal to my team, and their support and appreciation of her and of how I felt made me stronger and gave me a validation I didn't even know I needed. And even though I haven't adopted this cause as something I work for daily, I will always support it, because I have seen the strength that this program gives to trainees, to honorees, to family members, and the inspiration it gives to anyone who gets involved, even as a donor or friend of a participant. It is a truly life-altering experience in every possible, positive way.
Photos
The Great!
I've personally experienced the results of this organization in...
My achievement of true athletic ability, the strength, hope, and inspiration obtained by cancer survivors and the families of those dealing with cancer.
Ways to make it better...
If I had to make changes to this organization, I would...
Emphasize the social aspect a bit more. Cut down on all the little administrivia and other elements so it doesn't always feel like there are so many balls in the air.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The supportive, upbeat environment.
The kinds of staff and volunteers that I met were...
Fun, approachable, and incredibly knowledgeable about the sport, the cause, and the organization.
If this organization had 10 million bucks, it could...
Cure blood cancers.
Ways to make it better...
I had had more time to devote to being a part of the team in a social aspect, and to go to more group training sessions.
In my opinion, the biggest challenges facing this organization are...
Organizing the resources for all the people that want to participate.
One thing I'd also say is that...
If you are at all interested in endurance sports, at all affected by cancer, sign up for TNT- it is not to be missed!
When was your last experience with this nonprofit?
2008
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