Over 1.8 million nonprofits and charities for donors, volunteers and funders

2020 Top-Rated Nonprofit

The Leukemia & Lymphoma Society

17,029 pageviews

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

Volunteering Oportunities

Nonprofit Overview

Causes: Cancer, Cancer Research, Health

Mission: The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

Target demographics: create a world without blood cancers.

Geographic areas served: USA / Canada

Programs: Research LLS is at the forefront of the fight to cure cancer. Compared to other blood cancer nonprofits, LLS is the largest funder of cutting-edge research to advance cures. We have invested nearly $1.3 billion in research. We are leaders in advancing breakthroughs in immunotherapy, genomics and personalized medicine. This research saves lives. These revolutionary new treatments originally discovered through blood cancer research are now being tested in clinical trials for other cancers. Patient Access As the leading source of free blood cancer information, education and support for patients, survivors, families and healthcare professionals, LLS helps patients navigate their cancer treatment and ensures they have access to quality, affordable and coordinated care. Research will help us achieve an end to cancer. In the meantime, patients need help before, during and after their diagnosis and treatment. LLS is the leading nonprofit that does just that. Policy and Advocacy Through our nationwide grassroots network of more than 100,000 volunteers, we advocate for policies at the state and federal level in a commitment to remove barriers to care for cancer patients. Our efforts have helped increase federal research funds, speed the review and approval process of new therapies and ensure patients are able to access lifesaving treatments. Many of the policies that we advocate for, at the state and federal levels, are universally beneficial for all cancer patients.

Community Stories

161 Stories from Volunteers, Donors & Supporters

2 Joel B.3

Client Served

Rating: 5

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.

Client Served

Rating: 5

In 2006 my husband was diagnosed with Chronic Lymphocytic Leukemia. We were told it was no big deal, so we lived life as normal, both of us teaching and leading extracurricular activities in a rural area. Then in 2012, 3 weeks after we married, my husband saw his oncologist. The CLL had blasted which meant his blood stream was filled with leukemia cells that were killing his cells. He had less than a third of the red blood cells we need to carry oxygen. He went through 8 months of chemos where it became obvious that neither of us would work again. Then the only option left was a stem cell transplant. We had to leave our home and move 200 miles away for this. During this time, the Leukemia and Lymphoma Society helped us so much with paying for medications, insurance premiums and all the other costs associated with a cancer diagnosis. My husband was able to take early retirement but I am not able to work because he needs a 24/7 caregiver. Our income was slashed by 75%. Even with lots of support from friends and family, we just wouldn’t have been able to afford to live and pay for the out of pocket medical expenses without the help of the Leukemia and Lymphoma society. Today is my husbands 7th birthday for having a stem cell transplant. We still need and receive help from the LLS. We are very grateful for their support. We would never have made it through this time without their support. And yours! This is my husband, our daughter and granddaughter. Without the support from LLS , my husband would not have met his grand daughter and grandson. We are grateful.

Volunteer

Rating: 5

I was a candidate for Student Of The Year in 2019 and I had the most eye opening experience. It allowed me to meet a ton of people and hear their stories of battling cancer. At times it was stressful however knowing that you are making a difference in people’s lives makes it all worthwhile. I was able to spread more awareness about blood cancer and how it effects people around the world by utilizing social media to the fullest extent. I am continuing to work with the organization because of how amazing everyone was to me and how happy I was doing it. Everyone who I’ve met that works in this organization have been such kind and hardworking people and you can tell that they truly care about what they are doing.

General Member of the Public

Rating: 5

The experience with leukemia & Lymphoma Society was very helpful with getting my travel Visa card for gas since my drive is 80
miles around trip I’m going on 39 infusions
at the Clovis cancer Institute Clovis California thanks for all your help
Bobbie Mills USAF Veteran

Volunteer

Rating: 5

I am an elementary school teacher and coordinator for our annual Pennies for Patients campaign for the Leukemia and Lymphoma Society. Years ago, we decided to participate because we had a student at our school who was a leukemia survivor. But it became much more than that. We were touched by the stories of other survivors and the families whose lives were made better through the work of this organization. To date, our small elementary school has raised over $50,000 and it has changed the culture of our school! Students approach me months in advance to ask me when our campaign starts and to let me know that they have been saving their coins for a year! Our students truly can sense that they are a part of something greater than themselves, and that is why we will continue to participate in the years to come. Thank you so much for the incredible, life-changing work that you do!

Client Served

Rating: 5

I really don’t know where I would be without the LLS COPAY ASSISTANT PROGRAM!!! I was diagnosed at age 45 with Lambda Light Chain Myeloma. The team at my Cancer Center informed me of the services so I applied and was accepted. I have now being fight for 16yrs. I have had 3 Autogolous Stem Cell Transplants, numerous types of chemotherapy treatments over the years. Just dealing with the disease is enough on a person and their family not to mention the financial aspect. This program with some work on my end... proof that I have paid the bills helps me get reimbursed for Medicare premium, my secondary that picks up what Medicare doesn’t pay, my drug plan & also gives me a drug card through them that picks up medications that are covered under a formulary. I cry every time I go to the mail box and receive the reimbursement check. I pay almost 500.00 out of my pocket for all of this coverage so whatever I get helps my husband and I. I am on disability and get 1338.00 a month so the insurance comes off the top. I think many time GOD what have I done that you would be so kind as to help me in this manner. As of today I just found a few days ago that I am out of remission again but this time is different Lytic Lesions are now involved which has not been the case in the past 16 yrs. I have a big lesion on the head of my femur and others in my pelvic area on the left and right so I am now having to walk with a walker and suffer with constant pain. BUT yeah I can still walk, be with my family & friends I SM BLESSED!!!!
All I can say is the comfort of knowing that LLS is here for me and a multitude of others is overwhelming!!!! I hope that just reading a little of my story YOU will know beyond a shadow of a doubt that YOU supporting ALL OF US means more than you could ever fathom!!!!

Donor

Rating: 5

I donate to the Leukemia and Lymphoma Society on a regular basis and am so inspired by all they do to help people. This is truly a great organization!

Robert M.11

General Member of the Public

Rating: 4

It all started in July 2011. I started getting short of breath just walking in a store.
I then nicked my neck shaving and couldn't get the bleeding to stop easily. Then one morning taking a shower I notice large brushes on my legs groin and arms. The next morning I went to my VA hospital. They took blood and had it analyzed. Results came back that my wbc was extremely high (may be wrong how I describe) Dr said normal was around 10000 my was 157000.
They transmitted slides to a specialized co in coloroda to define what it was.
They reported it is APL leukemia. Then two doctors came in to tell me this type has a 85% favorable out come.

I was immediately transfered to University hospital in Cincinnati. (The rest is not pleasant to read, but I feel the end message can be comforting to some) Almost immediately i had a team of doctors who would visit me everyday. I was diagnosed with DIC and DVT. Dic is brain bleeding and dvt is blood clotting. They told me they couldn't treat the two because one treatment would complicate the other.
They put an iv filter in the artery in the stomach to filter clots. APL's characteristics are internal bleeding. I was bleeding internal alot, so I had many blood transfusions for this.
I was given a wonderful drug , Atra. It was developed in France by observing how the Chinese where treating APL which i believe was vitamin A. The French eventually were instrumental in developing Atra. I was also started on chemo.
I had all of the awful side effects, but the doctors did everything possible to make me comfortable. I was discharged 5 weeks later in remission. Had to go to a nursing home for a while to get back to physically stronger. I had to give myself two injection everyday of Lovenex in the stomach fat. Really was not that bad. The needle is very short and thin, really doesn’t hurt.
I then had 52 visit to an out patient oncology clinic for more chem, IV Arsenic Trioxide.
This is when all my skin peeled off in sheets. Also all my nails started falling off. One good side effect was it killed off my toe fungus.
This w a s not a difficult time.

Overall it took about 30 months to get back to normal. Gained back the 50lbs I lost.

My message to people with APL is it is highly survivable. I considered it another bump in the road of life. I never never thought of not fighting it or giving up. I believe it gave me an insight on how vulnerable we could be but knew technology was on my side.

It's been 9 years and the only symptom that MAY be related is peripheral neuropathy in my feet. But medication is available for this.

That's about it, keep faith.

Donor

Rating: 5

Allow me to start by saying that I am a survivor. When diagnosed (NHL Follicular Lymphoma), all I heard was the”C” word! Afraid, Alone, Unsure. Kicked fight in the belly! The questions like whats left?, how long?, is there hope? Now my fantastic doctors tried to explain and comfort but they were the ones that laid this on me! That’s where LLS came in. They were my source for educating myself about the disease. A true wealth of knowledge was waiting. I found out just how many persons, young and old suffer from these blood cancers. I read about the current treatments and the treatments being researched. There was hope and encouragement! But I also became aware of the financial costs in researching and developing new treatment regimens. Exploring outside of the boxes. That is when I decided to participate in my first Light The Night fundraiser walk in Pittsburgh. It was there that I saw the young and old with their families. I saw the doctors, nurses and technicians that care for us. And... I mean CARE with Capital letters!!! My family became immense in a heartbeat. This family, here and throughout the country, is the family that will defeat these blood cancers. I am currently in remission. I never realized how sick I had become until I became well again! The treatments worked for me. When we walk, we survivors wear a light blue t shirt to signify our journey. There are many light blue shirts in the crowd but far from enough! We need more help. We need more stem cell donors. We need more financial donors to carry on further research. Please join our family!

Patricia A. C.

Client Served

Rating: 5

Oh my God, I am so grateful for a non profit such as LLS.
My name is Patricia Castro and I was diagnosed in January 2018 with multiple myeloma. I went through a lot of financial, emotional and physical despair.
LLS have given me someone to talk to that is going through the same as I and around the same age. I appreciated that so much. I am in touch with the two lively ladies and I now call and check on them. So I would say that they help me are excellent networkers in connecting you with someone to talk to. Because everybody don't understand what you go through daily. So i just stay connected.
LLS give back. I have ask for help financially and I have never been turned away. They help me get to my appointments by giving me gas money. Food to eat when I had no finances but for rent. They are a blessing to me in all areas
Counseling help when you need someone to talk to also.
Thank you LLS for all you do for us. Thank you for giving back.
Please donate for that reason alone. They give back.

Cathy C.6

Volunteer

Rating: 5

I am both a client served and a volunteer. My son Reilly, died of leukemia at age 17 in 2017. He had an extremely aggressive form of T-cell leukemia and I turned to LLS for information and advice. I want LLS to continue their good work, so I have done volunteer work for my local chapter as well. It’s a fantastic organization working to fight a horrific disease.

Client Served

Rating: 5

I have been fighting Stage IV Non-Hodgkins since 2012. In my bone-marrow and spleen. The Leukemia,& Lymphoma Society has been so wonderful and kind to me. I am 73 years old and their financial support has taken a lot of worry off my mind. My Medicare and AARp United health care, and Silver script are almost $400.00 a month. Without LLS I would be in dire straights. I have had 46 Chemo treatments , This cancer is treatable, but not curable so you need good insurance. Thank You LLS. for all your help.

Volunteer

Rating: 5

I'm malichai, my school did a fundraiser for the leukemia and lymphoma society. This meant so much to me because I lost my auntie Lexi during her fight with leukemia back in 2016. To be a part of something to help those in need during their battle with leukemia, lymphoma, any cancers, or life threatening diseases meant so much to me. So with the help of my momma and her reaching out to her friends and our family, we were able to raise more than $200 for the cause. It felt so good know it could bring comfort or happiness to even one person struggling. Thank you to the leukemia and lymphoma society for letting me be a part of it all!!!

1

Client Served

Rating: 5

During the darkest time and days filled with anxiety and fear this organization gave accurate,scientific,current information of the highest caliber. I attended one of their symposiums and learned first hand from the foremost practitioners in the world. They also are a source of financial support for some and emotional support for all. This organization makes a very tangible contribution to the patients and families and there is no way I can say enough about them.

1

Client Served

Rating: 5

My daughter was diagnosed with Pre-B Cell Accute Lymphoblastic Leukemia when she was just 6 years old.

Her father was diagnosed with Non-Hodgkins Lymphoma.

During the most difficult times of our lives,, our family has thrived thanks to the compassion shown by LLS. With every walk, every support platform they offer; even down to the reading material provided, we've come to feel very cherished by the foundation.

We will forever consider LLS part of our family.

Now with two amazing cancer SURVIVORS, we hope to help support LLS the way they've supported us.

1 Brent N.2

Donor

Rating: 5

LLS is a amazing non-profit.

They combine a focus on fighting to save people’s lives with a fundraising approach that meets supporters wherever they are, whether you are an athlete, a survivor, or a business person wanting to be sure the most important good is done.

We have participated in the Annual Light the Night walk for 4 years, starting as my sons Leukemia treatment started. One if the most powerful aspects of this walk is it allows you to be drawn in to your comfort level. The first year friends and family joined us, but we stayed on the periphery of the crowd, not really sure.

Last year, we were invited to join a team by the clinic where our son was being treated, we were drawn all the way into the middle, fully participating in the Ring of Honor, and it was deeply moving.

LLS funds research, but at the same time they build a community. Definitely an outstanding organization.

General Member of the Public

Rating: 3

I am major Singh Sivia I am patient of blood cancer (CML)PLEASE HELP ME MONEY I AM PATIENT OF BLOOD CANCER I HAVE NO MONEY FOR TREATMENT PLEASE HELP ME I AM CURRENTLY UNDERGOING TREATMENT I AM CURRENTLY NOT EMPLOYED MY CONDITION DIFFICULT

1

Client Served

Rating: 5

Way back in April of 2011 I was diagnosed with Chronic Myeloid Leukemia or CML. My oncologist recommended that I could get my best information from LLS. That fall my daughter and wife formed our first LLS Light the Night Team and then dragged me to my first LTN event (I was still very angry about CML). They brought about 8 of my closest family and friends and I've never looked back. All the informational materials and activities from LLS were and are FREE. Our first LTN Walk brought tears of joy to my eyes. The stories shared by the honorees were just what I needed. Currently my CML is completely under control thanks to the medication that was developed through support of LLS and the genius of Dr. Druker. I am an active chat member through LLS' CML Chat, am captain of Team zLightful for LTN, I've been trained as a First Contact. LLS helped me find my way through this difficult journey. If you have a blood cancer or are a caregiver LLS is here for you.

1 David R.13

Volunteer

Rating: 5

I had the privilege of working with the Leukemia & Lymphoma Society Oklahoma chapter. I worked on a team during the Man and Woman of the Year campaign. The campaign kicked off shortly before the COVID pandemic. I was amazed at how well this organization was able to shift their fundraising efforts to a virtual campaign. Since blood cancers don't halt during a pandemic, the work of this organization is truly essential to so many.

1

Volunteer

Rating: 5

Last spring I was given the amazing opportunity of working with the Leukemia and Lymphoma Society and raised awareness and support for all they do. I truly enjoyed working on the Student of the Year Campaign as a Team Member because every single person was there to benefit others. I thought it was a great way to get the youth of today active in supporting the fight against cancer and educating everyone in what LLS does. It meant so much to me that I was able to care for others while at the same time doing it for my family members that have personally struggled with cancer. It was a wonderful experience that I wouldn’t change for the world! I learned so much by listening to our guest speakers, meeting our strong role model, Portia, and engaging with members of our community. This organization makes the goal of ending cancer seem that much more achievable and I am thankful I got to be apart of it!

1

Client Served

Rating: 5

I had never heard of them until some of my treatment was going to be very expensive. The patient advocate at my Drs office asked if he could try and get me a grant to cover the gap in the pharmacy coverage. I have since used the L&L society several times and their grants really help.

1 Patrick J.4

Donor

Rating: 5

I can’t believe how well they keep donors informed with life stories and advances in treatments.

I love helping this cause because they really care so much about those whom they seek to serve.

1

Client Served

Rating: 5

I was diagnosed with Hodgkin’s Lymphoma at the age of 22 and underwent 6 months of chemotherapy, and unfortunately relapsed less than 3 months after finishing treatment. I then received more chemotherapy and a bone marrow transplant, and I have been in remission since April of 2019. Thanks to LLS, I was granted a prepaid bank card that could be used for transportation expenses, this was extremely helpful as my treatments were out of town. Not having to worry about travel expenses was a huge relief to me and my family. LLS continues to provide care and support to anyone effected by blood cancer.

1

Client Served

Rating: 5

My name is Renee, I am a survivor of Multiple Myeoloma. I was diagnosed in August of 2014. This was hard and I was afraid for a moment; because my mother had died from pancreatic/liver cancer in 2008. The Leukemia & Lymphoma Society has truly been my help and life saver.
This organization has provided resources for me to help with my mental health, assistance with my expensive medication that I am told that I have to take everyday for the rest of my life. I have been blessed to be here to witness the birth of my newest grandson and have the opportunity to be here for other 4 grandchildren. This year they helped with a grant for food because I was furloughed from my part-time job due to Covid-19.

Leukemia and Lymphoma Society is a God send and I am so grateful for the many people who provide donations to this organization.

God bless you.

1

Client Served

Rating: 5

My son Braden was diagnosed with ALL in December 2017. The Leukemia & Lymphoma Society has helped us financially and informatively. For that we are forever Thankful. It's one of the Best nonprofits hands down!

1

Client Served

Rating: 5

I was diagnosed with Plasma Cell Leukemia (an aggressive form of Multiple Myeloma, an incurable blood cancer) in December of 2019 and began chemotherapy on January 30, 2020. Because my daughter had a friend who volunteered with LLS, she learned and passed on to me that LLS provided financial assistance as well as educational information from top MM specialists throughout the country. I have recently been made aware that my MM was likely caused by agent orange exposure during military service in Vietnam. While I have been undergoing treatment, the services offered by LLS have greatly benefited me and my family. I am currently in remission awaiting a stem cell transplant and can’t say enough about this great organization!

1

Client Served

Rating: 5

I was diagnosed with myeloma in 2008. I was in denial at first because I just couldn't imagine me having cancer. Without the help of LLS there are somethings I don't know how I would have gotten through. I love you LLS and I will always be there to help as much as I can, anyway I can.

1

Client Served

Rating: 5

This nonprofit has been a saving grace for my family. I was diagnosed in 2018 with stage 4 Hodgkin lymphoma withe three relapses and finally an auto stem cell transplant to save my life. They gave me food gift card, gas gift cards, and lodging. I have to children and am a single mother that has been through the ringer with cancer and they are amazing.

1

General Member of the Public

Rating: 5

I was first diagnosed in Oct 2011 with Waldenstroms cancer and have been in treatment since. I am thankful for the doctors and their staff for all their help. I want to tell all never give up as things change every day. All the people I have been in contact with are amazing. Hope all who read this remember never say never. I am a woman of 80 years young and I intend to be around for many more years.

1

Donor

Rating: 5

For many the idea of donating bone marrow is a very scary proposition. Fortunately
The Leukemia & Lymphoma Society, and groups like theirs, really do a great job of walking potential donors through the process. They fill-in the knowledge gaps and make you as comfortable with the process as possible. Beyond that they really bring home how important your donation is to not just the recipient, but the recipients family as well. second only to the day I became a father, the day I donated my bone marrow was one of the the most humbling of my life. Everyone of us has the potential to save a life, sign-up and help The Leukemia & Lymphoma Society continue to do this most important work.

1

Volunteer

Rating: 5

Started with DLBCL lymphoma in 2013. Received RCHOP and was free of cancer for 6 years. DLBCL has come back along with CMML leukemia. Currently 2 weeks into CAR-T therapy. Wondering who else has had CAR-T and how it worked out. Also wondering who has had any experience with CMML?

1 Christina F.3

Donor

Rating: 5

As a leukemia survivor myself, I feel like the Leukemia & Lymphoma Society does so much to not only support patients through some of the most difficult times in life but help their caregivers navigate through understanding their needs and condition. They work tirelessly to fund research which in turn helps patients get the latest and greatest of care. Thank you LLS!!

1

General Member of the Public

Rating: 5

My experience has been in participating in the walk the last two years. My 34 year old daughter is a two-time recipient of bone marrow transplant and is doing great. I thank God for LLS because of all you have done finding cures and treatments for people like my daughter. It has been amazing seeing all the ways my daughter’s life has been saved. It has been a miracle seeing so many caring, kind, compassionate, knowledgeable people involved in helping my daughter, from doctors and nurses to chaplains and patient services. Thank you LLS!

1

Donor

Rating: 5

The highest standards at the service of the noblest of causes, research and support to families that are victims of cancer in the Leukemia and Lymphoma forms. And behind the caregivers that help support all of us.
Kudos for the wonderful work and bringing hope to all of us !

1

Client Served

Rating: 5

When my husband was diagnosed with multiple myeloma we called the cancer society to be basically told there were lots of programs but not for us since we had income!
At the suggestion of friends I called the LLS who could not have been more helpful and supportive. We did not need a handout. We needed a person who understood and could give us info and keep us calm. They did. They actually called once a week to check up in us until we left town for his treatments. They still touch bases every so often to make sure we are ok.
We are surviving and getting back our lives. And a good portion of our sanity and state of mind and heart is due to the volunteers at the leukemia & lymphoma Society.

1 Lynia D.

Client Served

Rating: 5

This is the best non profit I ever known ,they help me more than I can ever imagine. I wouldn't be able to afford my cancer medication without them. I praise the Lord for that foundation.

1 Tom Nomiddlename M.

Client Served

Rating: 5

Research news keeps me informed of latest trials and study results for Multiple Myeloma. It gives me an arsenal of hope when current treatments slow down or fizzle out. It's encouraging to know I have a strong advocate in my corner. Thanks for your hard and dedicated work!

1 Mickey J.

Volunteer

Rating: 5

I first heard about the LLS Light the Night walk about 20 years ago and have been participating every year since. My dad passed away from Leukemia i 1985 before there were options to treatment. I am so glad to help out any way I can so that future generations can get the medications they need and possibly put an end to blood cancer. Our local chapter has been extremely helpful with materials that I need, advice, and I was part of a team that brainstormed ideas to promote the walk. I would not have been able to raise money and awareness without my local chapter!

1

Volunteer

Rating: 5

My name is Anthony Russo and I work for Bayer Pharmaceuticals in Whippany, NJ. During my first week of employment back in august 2019 I attended an LLS event in one of the showrooms at our office and I was immediately hooked in. Bayer already had a Bayer LLS team so I joined without hesitation. My wife and I attend the Night the Light event in Morristown and it was just a wonderful event with so many success stories and stories that tugged at your heart string. Ironically on 6/12/20 of this year I myself was diagnosed with Multiple Myeloma and am currently undergoing my treatment plan. Everything happens for a reason and I'm grateful more than ever for joining the Bayer LLS team and helping such a worthy cause.

Thanks you.

1

Client Served

Rating: 5

I was diagnosed with myloplastic leukemia and given 6 months to live I had a bone marrow transplant. I survived 17 years then found out I had AML 40 % of my marrow was infected with cancer in 2019, I was given 3 months to live, i had a stem cell transplant in November of 2019 it has been 9 months and I am 100% leukemia free.

1

Client Served

Rating: 5

I was so fortunate to learn about LLS when I was diagnosed with AML leukemia atWVU Hospital. Besides my health I was worried about the financial burden I was putting on my husband! At 70, I am not wealthy. Because of all the contributions of supporters, the financial aid has been a God send! Now I can concentrate on getting well. I thank everyone who helps me! Medical bills, transportation costs, and many other expenses! God Bless you all!

1 Angel C.3

Client Served

Rating: 5

LLS saved my life! I am a survivor of multiple myeloma thanks to life saving prescription and insurance reimbursement from LLS. During treatment, the cost of medication and covering deductibles would have been impossible. LLS covered it immediately allowing me to continue treatment. I continue to receive support following two stem cell transplants as the cost of insurance continues to rise. Not only the financial support but the education and patient support is excellent. The staff is always pleasant, supportive and easy to communicate with in a stressful time, they are a blessing.

1

Client Served

Rating: 5

Saved my sanity after 2013 diagnosis of MCL and following chemo and radiation. Still here and under control.
Grandpa

1

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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

2

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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

1 Melanie Zurel A.

Volunteer

Rating: 5

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!!
Melanie
Embrun, Ontario, Canada

Review from Guidestar

Volunteer

Rating: 5

They don't help Indians but I'm happy for the people to whom they helps...... Doing a great work.....

Review from Guidestar

1

Professional with expertise in this field

Rating: 5

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

3

Client Served

Rating: 5

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,
Nancy E.


Review from Guidestar

2

General Member of the Public

Rating: 5

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

1 Robyn A.1

Client Served

Rating: 5

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

General Member of the Public

Rating: 5

Your Society has opened a window of opportunity to my Father and myself..Thank you all your support .

Review from Guidestar

6

General Member of the Public

Rating: 1

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

14 DianaD530

Client Served

Rating: 1

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!

5

General Member of the Public

Rating: 5

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.

https://www.gofundme.com/blood-cancer-treatment-cost

9

General Member of the Public

Rating: 2

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.

4

General Member of the Public

Rating: 5

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

2

General Member of the Public

Rating: 5

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.

http://www.lightthenight.org/uny/

Review from #MyGivingStory

7

Donor

Rating: 1

Chapter manager NY/VT engages in breach of privacy. Corporate unwilling to help directs to chapter manager. Very unorganized and unprofessional.

Comments ( 1 )

profile

NatalieBarreto 10/02/2015

Thank you for bringing your concern to our attention. We will investigate.

19

Board Member

Rating: 1

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.

11

Client Served

Rating: 5

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.

24

Professional with expertise in this field

Rating: 2

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.