The care, concern, information, and resources I received from my interaction with Kritstin at LLS was life-giving. Plus she followed up by sending me recap info and resources that solidified all the rather sketchy info I had collected from my doctors and google. I had ironically hosted a few fundraising events for LLS before I was even diagnosed with Lymphoma. I am so grateful to know that they are putting their resources to such good use by helping patients like me navigate the rough journey of blood cancer. I get my confidence and peace from God, but these angels have helped me maintain that peace.
Saved my sanity after 2013 diagnosis of MCL and following chemo and radiation. Still here and under control.
It has been an amazing process, LLS has a great staff and being apart of the student of the year program. It is amazing seeing LLS enabling these high school students to do incredible things. Setting them up with leadership, and networking skills. Something That no other program teaches high schooler. I love this nonprofit and am greatly invested in is movement.
I contacted LLS to learn if they had a position on Roundup. I received the statement and other contact information. I administer a Facebook support group for patients with Mantle Cell Lymphoma and their caregivers. We have 614 members. This information will be very helpful for them when the lawyers begin their second round of badgering for business. Special thanks to AnaPortillo for such a quick response. Thank you, Ana.
P.S. I am also a patient of MCL, Blastoid Variant.
Review from Guidestar
The information I received from LLS helped me prepare for Survivorship: I was able to organize and consolidate my questions and send them to my oncology team before my appointment. This helped maximize time spent face-to-face with my doctor and get all the answers I wanted, so I left the appointment with peace of mind and armed with the confidence to move into successful Survivorship.
Review from Guidestar
Needed some help with getting information regarding a personal CLL problem.
Spoke to Kristin Scheeler, who was exceedingly helpful.
Emailed a ton of excellent information to me.
Was very pleasant and well informed.
5 stars plus!!
Review from Guidestar
Speaking to Amy Lane this morning was delightful. She was kind, unhurried, and full of excellent information and advice. Her kindness warmed my heart!
Thank you very much!!
Embrun, Ontario, Canada
Review from Guidestar
They don't help Indians but I'm happy for the people to whom they helps...... Doing a great work.....
Review from Guidestar
The conference "Understanding the emotional effects of cancer" was excellent and Dr.
McFarland was empathetic in his manner. My niece age 41 had Non- Hodgkins Lymphoma, stage 1 then stage 4. At age 41 she was addressed by herself. Her parents were not part of the information. It is vital that caregivers are prompted about what to expect in this way. The process is so painful, it may be very helpful. Only at Sloane were the parents helped-not at other hospitals. My dissertation was on kids who survived 1989 and so much is new,I hope all those in the field are well caught up. Your work is needed.
Review from Guidestar
I want to thank the Leukemia and Lymphoma Society (LLS) Information Center, especially Nikki Yuell, for the time and effort she put into furnishing me with such a comprehensive resource list. I can hardly believe they were able to provide so much information to me so quickly! I'm really impressed with the amount and variety of resources there are for cancer patients and their families and caregivers. I also appreciate Nikki's comments, which help me make sense of and prioritize, according to each family's situation, all the resources that are available.
Also, I want to thank Nikki and the LLS Information Center for helping me so much over the past several years. The resources they provided and explained to me in our telephone conversations regarding CLL, clearly saved my life. Because of this wonderful team of Information Specialists, I was able to find an excellent CLL specialist and get on Imbruvica when I needed treatment. That was over three years ago and my health is much better, as long as I stay on this medication.ul
Aside from the information itself, which was extremely helpful, the calm and caring demeanor of LLS Information Center staff and management, provided real comfort and support during a very stressful time in my life.
With much appreciation,
Review from Guidestar
Thank you Becky for your kind efforts in helping during this difficult and stressful time. Cant begin to Express how valuable people like your self and organizations like Leukemia and Lymphoma Society are to the many people having to face the hardships of cancer and the many trials that come along with it. My heart goes out to you and the LLS organization. God willing I to will be able to contribute to this noble cause someday soon. Blessed be your hearts. Many Thank Yous.
Review from Guidestar
I want to thank the Leukemia & Lymphoma Society for the very rapid response to my quest for information about a very rare form of cancer found on my removed thyroid. The researcher sent an extensive list of studies and information for me to better understand the diagnosis and the implications.
Review from Guidestar
Your Society has opened a window of opportunity to my Father and myself..Thank you all your support .
Review from Guidestar
Only about 40% of the contributions go to helping those with leukemia of lymphoma or for research. Salaries and other expenses are too high.
Review from Guidestar
First off I was accepted for their Co pay assistance program in March. I was told to send in my social security part b Co pay benefit explanation. I sent them the copy which stated how $400 would be taken out of March's social security payment for the first 3 months of 2018. on the assistance program that is covered, I was denied. They wanted the sheet that says I get $130 a month deducted. 130×3=400 So I called social security and they sent me that exact paperwork, faxed it out. Between those times i faxed them an order for a lymphedimia glove and sleeve, which i al so got a denial letter for. today 4\11\18, I got a letter stating all funds are exhausted, for a cancer society that gets over 100 million a YEAR, I DO NOT UNDERSTAND, but then I see what they pay for parties or fundraising events and it's 30% more than what's spent on patients. I fought cancer the last 4 years and the only help I received out of the 75+places I called was a $100 check from cancer connect and 200 worth of gas cards from uc Davis fund from DOLLY PARTON, DOLLY PARTON has helped me more than any of these CANCER SOCIETIES, IT'S DISGRACEFUL! YOU ALL SHOULD BE LOCKED UP! if anyone is planning to donate go to your local cancer center, ask the nurses which patients need help, AND HELP THAT PERSON DIRECTLY! I'VE NEVER, EVER EXPERIENCED SUCH BLATANT FRAUDULENT MATERIAL IN MY LIFE, posted are the 3 denial letters and the other we're out of funds, disgraceful!
My brother is diagnosed with Leukemia and needs a bone marrow transplant. We are from Ethiopia and none of the hospitals in Ethiopia gives that treatment. He needs to go outside if the country immediately and gets the treatment
Please help me save him as he has two children underage and all dependent on him. He is an assistant professor at the biggest university in the country with a PHD from a Canada and Masters in Sweden, biologist specialized in fishery.
I am in remission from AML. I read one man who felt the woman disappointed with receiving no assistance fro, LLA was ungrateful. Realize it take money to receive treatment, just as it does to finance research. If I can't afford gas to get to my chemo then how beneficial is the chemo. If I can'afford food, let alone healthy food,' how well will my treatment work. Research is a huge part of where donations go, but so are the needs of the patient, I have been in those shoes as a patient....disabled receiving government assistance. We lost everything, even became homeless, due to the expenses incurred. One doesn't prepare for cancer when every penny goes to just living.
My son, my hero, my inspiration
Anthony was born in Mishawaka, Indiana at on March 27, 2002. I was a single mom working as a waitress and a bank teller while living with my mother. At 19 years old I had no clear indication of what my life would be like with a child. Little did I know he would be the influence for all the best choices I would ever make. If it were not for my 10lb 23 1/2” handsome baby boy, whom came barreling into this world blue and relentless, my life would have resulted in far less happy and pleasant times. I joined the Army when he was 3 years old to ensure our lives would have some stability and decrease in chaos. We didn’t have a home of our own, we were taken care of by my mother. He did not need for anything and I was so very blessed for that. He grew into a personality that one would describe as a ham. He loved making people laugh. He really loved being able to run and play without restraint. I ensured he would have all the opportunities to cultivate his numerous interests. We would finger-paint in the kitchen without rules (newspaper taped everywhere with Tony in a diaper and his hands, feet, and body for the brush). I involved him with all forms of chores and activities in the house. When he was 3 we commenced trying to teach him, or should I say allow him, to make Kool aide. That day was annotated as the Kool aide caper day! His curiosity was inspiring and everyday was truly a new adventure for both of us. He attended numerous schools due to our frequent moves from my military service. Although many would think moving like this would be disruptive, it was quite the contrary for Anthony. He loved to go new places, meet new people, and get out to enjoy life. He always had a sense of adventure to him and change was never something he feared. We settled in Seattle for our last home together from seeking out the children’s hospital as a last hope for a chance.
NEW STATE, NEW HOME, NEW SCHOOL: Upon our return to Louisiana, we were yet again on orders to move to Kansas. We were excited and curious to see what life would be like back up north again. We were thankful we would be much closer to family even if they drove us nuts sometimes. We settled into our new home and Anthony began school once more somewhere new. He came home the first week with tales of misadventures and all the friends he was quickly making. He was never one to be shy and was highly regarded by his teachers and classmates. The class clown with manners was something new many of the faculty had not seen before. I never had any behavioral issues other than the fact that he HATED homework. He was smart as a whip but when it came time to sitting still and showing his knowledge on paper, it was a fight to the death! Patience was definitely something we both learned to rely on together. A new week began and as I patiently awaited his arrival on the bus I was thinking about what we would be doing this weekend. I was planning a large Halloween event (it was our favorite holiday, mine more than his). I saw him coming off the bus with a slight limp. I asked very quickly “what’s wrong baby”? He said “nothing mom, my legs just hurt a little”. A little was one way Anthony showed how truly strong and enduring he was. He didn’t mention he cried through most of gym class. He didn’t mention he could barely bend his knees. He never wanted me to worry about him. He was always trying to protect my feelings. Even at the age of 6 years old he cared more about others than himself. To say he was tough is truly not an accurate description. The gym teacher had him sit out of class for the day due to his strained attempts at participating in kickball. I told him to try again tomorrow and I called the nurse to have her call me if anything changes or it gets worse. In my head I was thinking growing pains and a little too much activity. I was watching him wince and moan at home that evening and assumed he would be ok.
BUT, HE NEVER EVEN HAD THE FLU BEFORE…..:The next day he returned home but in a much worse state than the day prior. He could barely walk. He was crying on and off. He looked scared and now I was too. I immediately called the doctor’s office and the soonest they could see us was the next day. I was married to my ex-husband at the time and he was going to take him for me. I wanted to go but unfortunately the saying in the Army is if they wanted you to have a family they would have issued you one (thankfully this statement became irrelevant following his diagnosis). That evening while I assumed he was soundly asleep, a terrible scream came echoing down our hallways. It didn’t stop and I fell a few times running to get to him. I assumed the worse; a break in and someone hurting him. However; it was not that at all. He was lying in bed with his face frozen in pain. He was screaming that his bones hurt and he couldn’t move them. I tried to console him and hide my fear. I soothed him with words a warm towel and some Tylenol. I laid with him that night and prayed that he was going to be okay. To say the next day went by like a bad dream would be an understatement. I was in processing my unit while Anthony was at the doctor with his step dad. I was unaware of what was going on and dutifully watching my phone for any news. I made it home before they did that day. I watched my truck pull up with my beautiful son in the passenger seat, eyes red from tears. My ex-husband ran to the other side of the truck and began helping my son out. I darted inside to get his overstuffed bean bag to place in the driveway because he could not bear to walk another step. The look on his face was gut wrenching. I went into the house and was told the most unbelievable news I could have ever dreamed of. Something you would only see on a big screen between two seasoned actors. I was told they had a room at Children’s Mercy Hospital in Kansas City waiting for our arrival. It was vaguely stated that they may be concerned there was a need to check for blood cancers but most likely he just had a terrible infection and we would be back home in no time. I felt that this did not make sense. I felt in my heart and stomach that something was terribly wrong and they did not have the nerve to tell us. I packed a bag for a couple days in between constantly checking on Anthony and repetitively asking if he was okay. He kept asking if he was okay and I said they just need to do some tests and he would be just fine. I felt like I was telling a terrible lie. I didn’t know I really was. Anthony had never had the flu, an allergic reaction, or even a broken bone. He was healthy as developmentally ahead of his peers. I didn’t feed him fast food. We ate a full balanced meal every night at the dinner table. He even loved Brussel sprouts, yogurt, and salad. I drove with a determination I had never had before. Even more than while deployed and dodging things that would take my life. He slept in between us and my tears would not stop flowing. MORE EARTH SHATTERING NEWS: On the 2nd of October 2009 we arrived at Children’s Mercy. We did the appropriate paperwork at the first floor admission desk still unaware of what exactly we were being admitted for. Thankfully I had the foresight to join the military and insurance was not a concern. I could only imagine how this story would have unfolded if it had not been for the amazing healthcare benefits we received. We were escorted to the third floor via back hallways. Tony was in a wheelchair crying once more because of the pain. I inquired as to where we were going and was informed the 3rd floor. Upon our arrival I was a bit disoriented by the business of the floor to notice where we were. We got to our room which I immediately thought was very large and roomy for just doing tests. There was a whiteboard in front of my face that said: WELCOME ANTHONY to the pediatric cancer floor. For more information please check out www.cancer.org and follow the pediatric link. I felt the floor give way underneath me. I looked at Tony as he was being picked up and placed in his new bed, screaming from pain and discomfort. I held back my fear, anger, confusion, and sadness to assist in getting him some comfort. I knew at that moment we were no longer soldiers but we now had to wear the survivor hat. The next few days were like a reoccurring nightmare. Questions, history gathering, more questions. Meetings with doctors who disclosed he did in fact have AML. They took us to the bad news room for this. Many parents who have been in my shoes know exactly what I am speaking of. They gave us time to ask questions, cry, ask more questions, and yell in distress and confusion. After gathering myself with my new you have cancer now what binders I began the journey as a mom with a child who has leukemia. An advocate, vomit cleaner, head shaver, comforter, tear dryer, pillow, stress magnet, and more. Most of all, I was still his mother. Lost and mad that I could not do anything to make him better. No amount of “I love yous” or gifts made any of it any better. Watching him be poked for blood samples and scream because he had never had his blood “taken” before. Sitting in the waiting room while he went into surgery for his Hickman line not knowing the amount of detailed work in aftercare it would present. How horrid it would look to have tubes hanging out of his chest. The screams he would release while having his dressings changed. The fear of never knowing what was next. Dr. Gammis was our oncologist, friend, and most importantly my sounding board. I told him to never hold anything back and to be honest with even the worst of possibilities. I wanted to be informed, knowledgeable, and ready for whatever could happen. He gave me the best and the worst of news without any allusive or ambiguous wording. He was comforting and devious while interacting with Tony. He saw the fire in my son and we all decided that the aggressive and tedious chemotherapy regimen was what we needed to do. The details of the treatment are lengthy and boring you with them would be a distraction from the purpose of this story. Even though we were told Tony had one of the most aggressive leukemia’s in children and he also carried the FLT3 mutation making his disease even harder to treat, we stated often that he would kick this things but like they had never seen before. And my friends that is exactly what he did. Two months and two chemo regimen later, there was no leukemic cells to be found. We completed a few more rounds and were discharged with a hail and farewell of nurses and doctors all crying tears of joy. In my head all I could think was this was way too easy and there was no way this was over.
Part of living in remission was to return to the hospital once a month and he would have to endure multiple bone marrow aspirations until we reached the 2 year mark of all clear. They would draw his blood, check his height and weight, take his vitals, and we would wait a few days for the results. The time passing while waiting became less excruciating as time went on. With every all clear I felt a little less questionable about the ease of which he beat this awful disease. It all seemed too easy. Life went on as we had once before. He returned to school somewhat of a hero and enjoyed every minute of it. The only part he truly disliked was losing his hair and the stares he would receive when he wasn’t wearing a hat.
Out of nowhere:After about six months Tony was back to being himself physically and mentally. Nobody would have ever been able to tell he was just beaten down with a determined leukemia and deadly chemotherapy. He joined the tackle football team (with some reassurance from me to his doctors) and lived with the enthusiasm and comic relief I was always used to. Unfortunately this return to our normal was short lived. I was recently reunited with my middle school romance and we had moved in together with his son who happened to be the same age as Tony. They got along like two peas in a pod and at times not so much. But they both regarded each other as brothers and looked out for one another accordingly. While eating dinner one evening I noticed a large and swollen scab on the top of Toy’s right arm. He had on long sleeves and attempted to pull them down quickly. I began questioning him about the nature of the scab and examining it like I was a doctor. You see following the AML diagnosis, I went from a somewhat relaxed mother to a full blown hoverer. Every cough, sneeze, scab, bruise, or complaint I would directly connect to a possible relapse. I had no idea this was actually going to be reality. He explained to us that it was a bug bite he kept scratching. It was swollen and red to about the size of a golf ball. I could tell it was infected but I figured since his immune system was recovering it was just a little harder for him to heal. I called his local pediatrician and the next day we went in for our appointment. Following a very detailed health history and voicing my concerns the doctor swabbed his arm and stated they would proceed to treat as if he had a staph infection. I asked if she was going to draw his blood but she assured me it was not necessary and he would be okay. I left that appointment feeling that something was missed. I didn’t think the effort was placed in understanding his whole health picture. After a few days of antibiotic and creams, he spiked a 103 fever. It was after hours and I remembered quite vividly that while he was receiving AML treatment any fever of 101.5 or higher was an immediate ER visit. I didn’t hesitate to follow that guideline even though he was technically in the clear. My fiancé reassured me that he was just fighting an infection and the hospital would not be condemning him to a relapse. We both waited for what felt like hours for the doctor to return with the blood work results. A heard a knock on the door and when the nurse entered her face said more than her mouth ever could. I began shaking, trembling really, and sucking in my breath. I followed her into the hallway where her first words where “I am so sorry”. I crumpled and she caught me. She consoled me and asked me if there was anything she could do. Initially I said not but then I asked her if should could contact Children’s and coordinate our arrival. She smiled with tears as well and said she would do anything she could. I went outside to call my significant other and all I could let escape my mouth was “it’s back”. I still had to face my son and tell him the terrible news once more. I took a deep breath, walked into his room, and he looked up with tears and said “it’s back again huh mom”. I grabbed him and allowed him to cry for as long as he needed. It wasn’t long before he looked up and said “guess I am going to lose my hair again. But, hey at least this time I know what’s coming”. His bravery was unprecedented. He knew he would be receiving more chemo as well as a bone marrow transplant. This was the standard procedure for an AML relapse. He did not have any biological siblings so we had to rely on the donor registry. A marrow match was what we were hoping for since they have the best outcomes. However, Tony was incredibly unique in his genetic makeup and no human donor was close enough for the team to feel comfortable using their marrow for a transplant. We did however have a match to a chord. Mothers can donate their umbilical cords for the purpose of extracting the stem cells for cases like my son. Thankfully we had one that was only one point less than a perfect match! A transplant was an arduous process that kept us in the hospital for well over 10 months. Prior to even beginning I had to have difficult discussions surrounding complications with the worst being his death. This time was different, this time we felt more hope and encouragement for a cure than before. There was a new drug in clinical trials that Tony was applicable for. It had been shown to latch onto the FLT3 mutation and kill the copier that produced them. It sounded like this time, no matter what; this was going to be it! We were scared but excited at the potential for this drug (Sorafineb) and the transplant to rid us of our nightmare. We completed the 2 rounds of preparatory chemo to eliminate all living cells from his body. This treatment was to bring him as close to death but not quite in order to have the new stem cells graft without his body rejecting them as foreign. The day of the transplant was very anticlimactic. The most memorable part was the awful smell that we were warned of. I didn’t know what burnt cream corn smelled like but that day I found out.
Moving forward once again: Once again Tony surprised everyone but himself. He knew he would do amazingly well with the chemo and transplant. He told us it was no big deal all the time. He would say I was the one making it a big deal. I thought this is Ludacris!!!! He is undergoing some of the most life threatening medical procedures and I am wrong for thinking it was big deal. He was right. We were released from the hospital 100 or some odd days later. Awaiting us at home was a portable feeding system (which was about as awful to watch as the BMT’s), IV’s and fluids, and other various medical supplies that we were now in charge of handling.
We worked together as a family to ensure he was getting all his meds and flushes, dressing changes and feeds on time and clean. We did okay in hindsight. Following our second 2 year remission mark, we received orders sending us to Colorado. I called Dr. Gammis and his nurse to inform them of the news. They told me he is doing so very well that they felt he would be well into a long remission and did not fear any chances of another relapse. Another relapse was now the worst possible situation and fear I lived with daily. Although Tony went on with his life living and acting as if nothing happened, the truth is if it came back, there was not anything further the doctors could do. However, I was sure his AML was gone for good this time and was not at all concerned about the move or transferring his care. We made it to Colorado safely. We found a great house, got both the boys enrolled in school. We did have to stop the sorafineb due to complications consisting of severe bleeding inside his intestines. While he was supposed to be treated with it for many years, the doctors felt that stopping it now almost 3 years after his transplant was ok. If it wasn’t for the drug, they were sure he would have relapsed already and due to being past 2 years in remission, the drug had seemingly served its purpose. He was happy to have no further medications to take. At one point he was up to 10 a day. He told me to stop worrying so much and let him be a normal kid. So that it what I did.
The day my heart was ripped from my chest: 22 August 2014; following a mini vacation to Ohio to visit family Tony was admitted to the ER for a high fever that would not break. Call it intuition or motherly instinct; I knew it was back once more. I didn’t want to think the worst and wish it into existence but my head and heart already knew. We were officially diagnosed on 25 August 2014. I instinctually went into aggressive chemo mode as did Tony. He did not address the fact that we were told he would die this time. We discussed chemo and blood counts, possible plans and palliative care. Death was not spoken of until the first line of chemo defense failed. It was then I knew I would have to bury my sweet young man.
Our finals days:Our care conferences included Tony. I wanted him to have the autonomy to dictate how his body was treated. I knew he would die sooner than later and as a young man now he deserved to have a say so in his final months. The main question was always, what else we can do. Unfortunately, the same answer was given: with a second relapse and failed transplant there are no medical interventions that could give your child their chance of disease free living. So we began chemo maintenance with the intent of extending his time with us. All we wanted to know is why it has to be like this. He dictated what he wanted his DNR to encompass. Explicitly stating that if he stops breathing on his own he does not want life saving measures like tubes to keep him with us. This was the hardest part to hear and as his mother it took every fiber of my body to comply with his wishes. He expressed the types of medications and chemo’s he was willing to try. After all the planning was done, the emotions and fear swelled up. He would be okay then begin crying uncontrollably, asking me why he had to die, what was death going to be like, what was heaven like. I sat and answered all these questions and more as stoic as I could be. I kept my tears and fear from him. I couldn’t bear to burden his 12 year old heart anymore. We had a few outings where we could travel around Seattle within an emergency distance. In palliative care patients are giving more freedom to leave the hospital and begin enjoying what’s left of their lives. One day we ventured to Pikes Market. I gave Tony 80 bucks to spend however he wished. It wasn’t 1 block from the car I witnessed something I came to take for granted with my son. There was an older gentleman sitting on a bucket leaning against the light pole. He looked disheveled and distraught. I had always involved Tony with volunteer opportunities and giving more of himself than taking from this world. This sweet young boy with fresh 20 dollar bills in hand decided to exude those values once more. He handed this man a twenty, shook his hand, and gave him a smile. I kept walking as to not make a big deal and embarrass him. I asked him what he did like I hadn’t seen it happen and he said I gave him some money because he looked like he needed it more than me.
Goodbye came too soon: A few weeks later we decided to go to our new apartment in Seattle (next door to the hospital) and begin hospice care. He was distraught at first believing we were giving up on him, but his counts were proving the leukemia was more aggressive than the treatment. We spent that first night playing video games, monopoly, and eating a home cooked meal. Then the pain began. He was on a pain drip that was not touching the incredible burning feeling he was having through his bones. He would cry, vomit, cry, sip water, and vomit it all up seconds later. I explained we were doing everything we could and it was ta that moment, for this first time in his 6 year leukemia journey he said “Mom, I am done with chemo, I am done fighting”. I wept, I became angry, I left the room, and I wanted him to take it back. I gathered myself and went back in with his evening dose of chemo and meds. He said “this is the last time I am taking chemo” and “I love you Mom”. He fell into sleep finally around 1 am. The next morning I was awakened by my husband frantically trying to rouse me. He said “there is something wrong with Tony. He is lying on the ground not talking”. I fell and ran to his room where I found my son laying against the bed with his sweatpants down after he had attempted to use the bedside commode. He was staring at me but wasn’t speaking. I don’t know if he even could. He had green bile coming from his mouth and dripping down his chest. He had peed himself as well. Freaking out is not a great way to describe what I did next. Pure terror and panic took over. I called 911 and kept trying to get him to talk to me. He was completely unresponsive. I didn’t get to hear him say I love you. I didn’t get to hold him with him holding me back. I didn’t get to tell him how sorry I was for anything I could ever think of. I didn’t get to hear him utter another word ever again.
12 year olds legacy:Anthony died 3 hours later on the 9th of January 2015 at 952 in the morning. I laid next to him, touched him, felt his cold skin, and kissed him hundreds of times. I listened to the background noise of monitors warning us the time was nearing. There are no words to describe how those moments felt. I respected his wishes and expressed his desires to the emergency team. They gave us a quiet room on the cancer floor with one nurse present for privacy so we could watch our son die in peace. Why him? Through his life Tony showed great acts of courage, kindness, and forgiveness. He never complained about his path and always thought he was destined for greatness.
The Leukemia Lymphoma Society became a part if my life after my sons initial diagnosis. We knew how horrible and devastating our situation was and witnessed it over and over again with each new face that came onto the hospital floor. We volunteered out times, walked at all the fundraising events , spread awareness, and raised money to help LLS with the fight against blood cancers. I hoped my son would see a day that cures were more prevalent than remissions. Although that did not happen I still believe one day is sooner than later for others facing this demon. After Anthony passed they reached out and offered to honor my son as a remembered hero for the 2015 Light the Night Walk. My heart stopped for this was one way he would make the mark he asked me to do in his name. I was asked if I could speak at recruiting and fundraising events about him and our mission. Everytime I got on stage I felt the loss once more but, a calm would follow that allowed our story to move mountains and touch the hearts of so many who knew nothing about childhood cancer. I can't repay the healing the LLS has assisted in helping me achieve but I will always be one of their leading advocates in the war against leukemia and lymphoma. Below is a link to one of the presentations I gave to help raise funds for research and one of the videos of my son and I fundraising.
Thank you for reading and considering LLS.
Charmagne Alex Lafortune
https://youtu.be/mV5O8Y4O-bI - LLS presentation
https://youtu.be/9TOyOPQATWU - Tony and mom taking a pie in the face
Review from #MyGivingStory
This is Mama Linda. She is battling cancer – and she inspires me to give.
My mom is battling non-hodgkin’s lymphoma; she’s been fighting for her life for close to a year now. At first, I didn’t really talk about it to people beside my family and closest friends. But in August my mom received the (not totally unexpected but still completely unwelcome) news that her cancer didn’t fully respond to the first round of chemo. That it was still with her, and that she was facing a really tough few months of aggressive treatment with lots of hospital stays and a stem cell transplant down the line.
This woman is my light. People gravitate towards her – it’s her smile, her laugh, her open warmth that just can’t be ignored. She’s dedicated her life to helping impoverished families with young children. Everyone calls her Mama Linda because she’s been mother to so many – not just me and my sister. She is a wonder, and even this bad news she handled with bravery and with grace.
I, on the other hand, was a bit of a mess.
This is something so big, so scary, and so completely outside my control. Just the month prior we lost a beautiful aunt to CNS lymphoma and it felt like this unwanted evil was invading our lives and taking away those we loved so dearly. So of course I felt like I needed to do SOMETHING. It’s human nature, right?
That’s when I discovered the Leukemia & Lymphoma Society.
The LLS is the largest voluntary cancer research agency specifically focused on finding cures and better treatments for blood cancer patients, supporting hundreds of cancer scientists around the world. What they do – who they support – saves real lives. Lives like my mom’s. And every year they hold a fundraising campaign to light the night with love and hope. So I decided to get involved and form a team in my mom’s honor.
I announced it on Facebook, and within three hours raised a thousand dollars.
You read that right: $1,000 in three hours, via a single Facebook post.
We were floored at the outpouring of love and support – but that turned out to be only the beginning. My mom has made such a tremendous impact on her community that people from all walks of life rallied to support us in any way they could. Because my mom works to support families of limited means, honestly not everyone could afford a cash donation. So instead, those people joined our team to donate their time.
We fundraised HARD while my mom got her stem cells harvested. As we sat in the hospital together we hugged; we laughed; we cried; we couldn’t believe what was happening. I upped our goal to $5000 and sent hundreds upon hundreds of thank you notes.
Look, I knew my mom had deeply touched many people’s lives. Now I know exactly how much she’s meant to them. In just one month Team Love for Mama Linda raised $8700 for the Vermont chapter of the Leukemia & Lymphoma Society.
On Friday, September 25 my mom’s closest friends joined me in Burlington, VT for the LLS Light The Night Walk: a beautiful ceremony honoring all our loved ones who have fought their own cancer battles. It was breathtaking: each of us, together, weaving through the dusk of the city with a white, red, or yellow lantern as a survivor, a supporter, or in memory of those we’ve lost. The community came out and cheered us on; I patched my mom in via video call so she could take part. I can’t tell you how much this one night – and this whole campaign – meant to all of us.
I’m both humbled and proud of what we accomplished. But the Vermont LLS chapter has not yet met their goal; they’re still over $20,000 short of the $90,000 they hope to raise. Although my friends and family are tapped out, I want to do whatever I can to help the LLS hit their number. And so I ask for your consideration: The Leukemia & Lymphoma Society is a wonderful non-profit. The funds they raise – the funds we all raise together – goes to real scientists doing real research to save real lives, now. Please give us your vote – your like – your thumbs-up – so we have a shot at contributing $5,000 more to this cause.
My mom just got her stem cell transplant on Monday. I’m writing this sitting next to her at the Norris Cotton Cancer Center at the Dartmouth-Hitchcock Medical Center. By all accounts she’s doing well and she’ll be going home in another couple of weeks. The road ahead of her is long, but she’s a spirited fighter.
And this is the only way I know how to help her in her fight.
Review from #MyGivingStory
Chapter manager NY/VT engages in breach of privacy. Corporate unwilling to help directs to chapter manager. Very unorganized and unprofessional.
Thank you for bringing your concern to our attention. We will investigate.
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.
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.
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.
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.
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.
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.
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.
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.
Review from CharityNavigator
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:-)
Review from Guidestar
I have donated to this charity from time to time. I would like to help those with CLL in particular. I don't want to contribute to the half million dollar salary the CEO is taking. I'm glad I found out about it. Good grief. I'm going to look for a better place to donate.
In reading the posts on LLS, it does not surprise me a bit. I am a former employee of LLS. Just over three years ago, shortly after the current CEO was put in office, the company made an about face and overhauled the company nation wide. The corporate office let many of the staff go and re-hired new staff at many of the offices throughout the country. In many offices, entire staff were treated terribly and all were let go. New employees pushed hard to get money out of patients families and local businesses. Empathy appeared to go out the window with the management change. In my office, I personally witnessed Godly people who truly cared about suffering patients and their families get replaced by cold money grubbing staff who followed the new direction of demands sent down by corporate office; to fundraise fundraise fundraise. The push to raise money was suddenly NOT balanced with putting the money raised back into the community to meet the patients needs. I personally witnessed the financial aid program and other programs get slashed to the bone while the new staff pushed and pushed families, donors and businesses to donate large sums of money. The new focus was not on the patients but on fundraising. Watching programs get demolished before my eyes and patients being deceived was unbearable. . I have worked for non-profits most of my professional career. I was very proud of LLS and their professionalism when I first began to work for them. However, it was extremely painful to watch a good agency fall apart in such a short period of time after the new CEO took office. I cried....not because I lost my job, but for the patients I was helping that I knew were being cut off from deserved services.
I have volunteered & participated with this organization for several years, each time expecting, hoping for something better to come out of their research and fundraising events...but it all seems to be going downhill. I'm also an avid marathoner and have noticed that a lot of there Team in Training events have not been up to par with their competitors. Many other organizations (The American Cancer Society (DetermiNation Campaign), have a much superior presence at the same events and I don't feel the that same "special feeling" to be a part of The Leukemia &Lymphoma Society. My friends and I are now choosing to donate ($ and time) to other organizations and are saddened that the organization has lost so much over the years.
I used to contribute to the Leukemia and Lymphoma Society until I learned some facts. For those of you who feel your contributions and Team in Training efforts are helping to "cure leukemia and lymphoma" please check the publicly reported compensation of the CEO John Walter with other not for profits. For example, the CEO of Save the Children had total revenue of $540 million to manage. And, 90% of all expenditures went to Program Services. The CEO of Save the Children earns a base salary, according to the filed (and public) 990 form, of around $390,000. John Walter of LLS earns a base salary of over $500,000, which it reported lost $3.7 million last year and has total revenue that is hundreds of millions less, with around 70% going to “Program Services”. Recently the LLS Board ended the role of the SVP Marketing and Communications because of the poor results. Why hold only one person accountable for these results? These poor decisions started at the top. Maybe it's now time for the LLS Board to hold Mr. Walter accountable for running this once fine organization into the ground. I feel cheated. An outrageous base salary for a losing effort?? You might want to consider where your money is going too.
Review from CharityNavigator
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.
My son was 49 years old when he was diagnosed with AML. He was told he had a 25% chance of survival. He underwent severe treatment to get him ready for a bone marrow transplant. Luckily his own bone marrow was collected and harvested after his hard sharp treatments with chemo. It worked for him!! He has passed the 5 year mark, and is considered cured!! He is now 55 years old and feels that the research done prior to his experience with leukemia at least gave him a chance to live. He wants to give back to the people now going through the tough times with blood cancer treatments, and the research being done every day. SO YOU WILL FIND HIM, A SURVIVOR, AS A MEMBER OF TNT FOR A 100 MILE BIKE RIDE. He has been harshly training twice a week since February. He is a very generous man to do this. It is also very hard to ask for donations from friends, but he believes in LLS, and knows that some day they will come up with the answers to cures and even prevention, and hopes for patients and their families. (I wonder if you have statistics on how many participants are actually survivors of blood cancers.)
I work in cancer research and I have walked for LLS fundraising. I also send in change for my kids at their annual Pasta for Pennies fundraising school wide. However in recently looking for a cancer charity to donate to, I was shocked to see that the CEO of LLC takes in half a million dollars! That is outrageous. Their overhead is also high. I will definitely look for another cancer charity to donate to, perhaps something like Alex's lemonade stand. To me, if you are earning that much $, probably topping pediatric oncology surgeons, something is not right.
Review from CharityNavigator
If you do go to the website that Mr. Sergentakis suggests, you should also be aware that he is a convicted felon who continues to victimize this organization and its CEO with lies, libel and fiction created in his mind. Do your own research. Read about the cutting edge approaches, in fundraisining as well as research, that LLS is using to eradicate this group of deadly diseases. If you do go to this website, take in the rantings of an unstable man, then take note that he has posted things there that prove his guilt.
Our experience with Team in Training and by extension the LLS was great. My wife was diagnosed with CLL (Chronic Lymphocidic Leukemia) 15 years ago. Today, she is still very healthy and active and her CLL is in remission. We attribute much of this to chemo treatments using what was newly developed technology about 10 years ago. We believe efforts like TnT contribute substantially to this and other cancer/disease research. If it takes people to engage in a personal endurance challenge to motivate them and their supporters to contribute to this, we see no problem, in fact having seen it up close from many perspectives, seeing the results, we think it is terrific. This is true not only for LLS/TnT but all similar endurance based fund raisers for charity.
AFTER my wife was diagnosed, we participated in 3 Team in Training running events to both improve our health (thus fighting my wife's disease) and help raise funds for research and treatment. TnT raises many millions that got to fighting and treating blood based diseases.
Surely in participating, was some fun and friendship but that was not the purpose but just a byproduct. The time and work involved to participate far outweighs social and financial benefit for participants. IT IS NOT EASY.
We remained active in TnT for 15 years, assisting at many group meetings and promotions, mentoring/coaching others, and donating to many others TnT campaigns.
While there are clearly social and personal health/achievement benefits to participating, the work and effort involved in training and fund raising is substantial. Anyone who participates is to be commended. It is hardly a free vacation. As to 'repeat' participation as an imposition on friends, it is up to them if they want to donate again and again. It is equally difficult for many participants to 'ask' again. They do it through belief that they are helping others and that their friends agree. Most people will donate to some charities every year. Hopefully most people realize that the participant is (again) making a substantial effort in fundraising and training/participating and find it not easy again and again. It is NOT easy for most people to ask for financial support from others.For many/most the fundraising is even more difficult than the VERY difficult training and participation.
I think Team In Training is a terrific concept and it has been cloned by many other charitable organizations to the good of millions of participants, patients, families, research facilities, and treatment centers. I doubt the bottom line funding of these charities would be as good without these endurance training organizations and their many many volunteers and participants.
There are different types of non-profit organizations - some are strictly foundations collecting money and others are businesses funding research - LLS raises a lot of money, serves patients and their families AND funds real research...this is a multi-million dollar business with a great track record, results in research, and services provided...the question is, how much do you pay someone to lead an organization that is actually working to cure cancer? You might just get what you pay for...
This organization is truly doing what they say they will do - and they do it in creative and innovative ways...they are run like a business with true ethics and accountability...they are successful, even in these times, making real strides against blood cancers because of the way that they are run. Kris Sergentakis, another reviewer, is a convicted felon who pleaded guilty to defrauding this organization, and his website is nothing more than the disgruntled missive of a rat who got caught. His rants and baseless falsehoods about the CEO who put him behind bars with tons of evidence IN ADDITION to his admission are pathetic. Put more faith in the reviews of people who didn't steal money from them.
My nephew had lymphoma. I thought it would be good to
donate to this organization. I think that something needs to
be done about the CEO salaries because when you donate to an organization you want the money to go to the cause not to an overly large salary for the administrators. What about a limit of $200,000
which is pretty much stretching it. Too me is it sad that I feel
like I should not donate to organizations because the CEO is paid too much because you know there are people out there who need the
help the organization provides. Maybe someone needs to start
and alternative organization with a CEO with a reasonable salary.
Review from CharityNavigator
While I have witnessed many great things come out of the fronting organization (Team in Training), I have also witness personal greed. I used to be an ardent donator to anyone in the group who was "raising" funds. It finally dawned on me that first timers were serious. They had a goal, a family member, or someone close who had been afflicted by the disease. It was true and personal to them. These people came and went, usually for a one time shot. I started to wonder if it was really a check on their bucket list that ended up being the motivator, or loneliness, the need to feel part of something). In either case, most raised, ran and disappeared. Then there were the groupies, the ones that repeatedly raised for LLS. How could they do this I thought? Surely, friends and relatives were getting burned out by donations. I started to observe that the reason for joining in the first place was gone. It was now about "asking people to donate, so TNT can pay my way to an event that would cost me $$$$ of my own". What a gimmick...I ask people to donate, feed them a sad story, I raise my limit, they send me on a vacation. All I have to do is run, actually I don’t even think you need to finish, LLS already got their money. Do they care if you finish or not?
It is at this point that I stopped cold turkey and have never donated to LLS again and have lost respect for some individuals along the way. Hey, I wouldn't mind raising $4,500 to go to Dublin from the generosity of my donors!
But I can't, I cannot ask for people to donate money and have it in reality benefit myself. That’s not what it is for. Do my donators understand I will get a "free" trip out of the deal? Do they know they are paying for me to take a vacation? I think not.
Don't get me wrong, I believe in the mission of LLS, my mother died from Leukemia, so I understand the plight. I don't understand the mindset. If you want to raise money, then do it for the cause, give something back. Don’t make it a check mark on your bucket list, or a cheap way to fund your running travels. Donate your time to a cancer floor, to Ronald McDonald house, or something. But do not ask me to fund your trip!
Do you want to be my hero and earn my respect and my donation? Then turn down the trip and tell them it was for the people who have suffered and not for you. Tell LLS, you will pay your own way and have it be YOUR donation
Review from CharityNavigator
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.
Review from CharityNavigator
Though I respect the LLS charity goals, I must say that they employ phone tactics that have annoyed many, many people--which is wrong. They (according to them) employ an auto-dialer which calls homes--often later than is legally allowed--and the household member hears nothing when they pick up the phone. They do this over and over in one night. They tell me the reason is that they have too few people to handle the auto-calling mechanism. Stupid, intrusive and plain wrong. I would not donate to an organization that employs such annoying practices. There are many, many others. (The Internet is packed with complaints about this practice of LLS)
Review from CharityNavigator
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!!
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!
This non-profit acts like a creditor. This charity acts as if I owe them money. After providing a large donation, I've received 2 "hang-up" calls a day, 6-7 days a week (to my answering machine) for the past 4 weeks. They finally reached me on a Sunday evening; I was clear with the representative I would NOT be "calling or sending a letter to 12 of my friends & neighbors to solicit donations for LLS." I resent their constant calls and their method of fundraising is ridiculous and unprofessional in my view. I plan on contacting my local chapter to let them know I wont be supporting them in the future. Too bad as my company matches funds.
Review from CharityNavigator
I'm a lymphoma survivor and a five time Team in Training participant. Everything I see tells me that this is a good organization. I do think $500K is too high a salary for their CEO for a charity. However, the local people I see are underpaid from what I see and the hard work that they do. Plus none of the volunteers are paid and we put a lot of time into this. Any charity is going to have 20-25% of their revenue going into admin and fundraising, and LLS is no different. If it were 30-35%, I'd be concerned, but not 25%. I disagree with most of the negative comments that I read. Nothing is perfect but the mission of curing blood cancers is a very difficult one, and progress is being made.
The reason for using this site is to look at what they do with the money. They raised $510 Million in 2 years. They gave $175 million in grants. Where did the other $335 million go??? How about $160 million in salaries and benefits, $120 million in raising money and office expenses - pretty good offices, $12 million for flights and hotels.
WHY ARE YOU GIVING TO THESE PEOPLE???? WHY DON"T YOU JUST LOOK AT THE 990s???
Review from Guidestar
I'm very troubled about what has happened to LLS.
Their purpose has changed: from great to personal money.
Review from Guidestar
The Leukemia and Lymphoma Society is an excellent organization that funds research of blood cancers. The Society's funding has helped researchers make break-throughs in the fight against blood cancer such as the creation of Gleevec. The Society also supports patient education and offers support to blood cancer patients and their families.
Review from Guidestar
Never give to this charity if you don't want to be stalked with phone calls to your home, usually at dinner time. I gave to them once, and they asked for my phone number. They literally call my home number every day with solicitations
Review from Guidestar
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!
I'm giving LLS and TNT four stars. This is my first year with Team in Training, so I will come back and revisit my review once the season is over. So far it has been a great experience.
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.
The people in team in training and those whom work for the society have seen and been through alot. Many people on the team either have a relative or someone close to them be diagnosed with, live with, or even pass on because of Leukemia, Lymphoma, or any one of the other many blood diseases. These people are tough and helpful, fighting for a good cause.
I must admit that my reasons for signing up with the SF Bay Area Leukemia & Lymphoma Society's Team in Training (TNT) were none too altruistic. After grad school, all of my friends left the Bay Area, and so I had no life. My marriage sucked dead goats. And worst of all, I was quickly turning into a tub of lard. I decided that joining a triathlon team would ease my yearning for social contact, buff men, and (my own) toned toukhas. Deeply guilt-ridden Judeo-Christian that I am, though, I couldn't justify dedicating hundreds of dollars and hours of training to my own selfish needs. And so I made a charitable event out of my endurance sport aspirations by joining TNT. Oh yes. And I wanted to stamp out leukemia, lymphoma, and other blood cancers. But that came later. TNT does an excellent job of whipping its recruits' bodies into shape and their social networks into a fundraising frenzy. Each athlete has to raise several thousands of dollars - for my event, the 2005 Wildflower triathlon, the amount was $2900 - and the TNT staff armed us with Web sites, fundraising letter templates, and a bevy of fundraising event ideas - many of them involving copious amounts of liver-altering libations. The staff also guided us through a sane, safe, well-watered, nicely nurtured training regimen that, by Jove, resulted in about a hundred newly minted triathletes - all of whom are now, of course, my best friends. I can't ride my bike in Marin County without running into a fellow TNT alum. L & L also does a pretty decent job of educating TNT athletes about blood cancers, their causes, and their cures, as well as supporting research and patient services. What's not to love about this set-up? Well, I'm sure if you do it right, you don't wind up shelling out hundreds more dollars on your new best friends' fundraisers. But I didn't do it right, and probably spent at least as much money on donations as I did on gear. And triathlon gear is not cheap - a road bike with clipless pedals, a wet suit, and some toukhas-accentuating spandex don't come cheap in these parts. So it's an expensive way to raise money for blood cancer research and patient support. Also, I was required to drink far more alcohol than anyone should - a deterrent for folks who are trying to stay on the wagon. And the mean age of participants was probably 27, although the range was about 24 to 50, and so the demographics might not be welcoming to all. Finally, in all the pavement pounding and lollygagging, I'm not sure how much we paid attention to the cause of fighting blood cancers. TNTs strategy of turning its athletes' vanity and unspent glucose into donor dollars is brilliant; it would be even better if the organization could turn those resources into a deeper knowledge about nonprofit participation as a whole (e.g., which other diseases deserve attention, how the poisoned environment is increasing cancer prevalence, how else athletes can be of use in the world). But in the end, it was hellafun, and I was converted to the cause of supporting the Leukemia and Lymphoma Society forever.