The Leukemia & Lymphoma Society Blog

Let’s Speak With One Voice to Increase Research Funding

communityreply@lls.org — Wed, 24 Feb 2010 14:48:03 GMT

Thanks to cancer research efforts to date, 60 percent of all cancer deaths are now preventable. But today cancer still costs our nation 560,000 in lives lost and more than $228 billion in healthcare costs a year. And for many types of cancer, there are still no effective treatments.

Clearly, reducing cancer research funding for prevention and effective, less toxic treatments is unthinkable. At The Leukemia & Lymphoma Society (LLS), cancer research has been the top priority since our founding in 1949. That’s why LLS is a long-standing a member of One Voice Against Cancer (OVAC).

OVAC is a coalition of national nonprofit organizations representing millions of people in the United States who have this message for Congress and the White House: Increase cancer research funding NOW. We all know there is strength in numbers. Won’t you add your voice?

Join LLS and OVAC in making sure your elected officials hear and heed this critical message. What are we asking?

We are asking Congress to increase the 2011 budgets of the National Institutes of Health’s (NIH) by $4.2 billion (13.5 percent) and the National Cancer Institute’s (NCI) by $691 million (13.5 percent).

And we are asking you to advocate with us. Please visit LLS’s Legislative Action Center and urge your representatives to increase cancer research funding by sending the drafted email.

LLS and the other OVAC members have developed an ad that shows how more money for cancer research will benefit US health, not only physically but also economically. The ad is appearing in Capital area newspapers this week. You can download the ad from LLS’s website, then email or print and mail it to your representative’s office. You use LLS’s Legislative Search tool to find the office address.

Let’s speak with one voice now and give our legislators the clear message: Increase cancer research funding and save lives.

Should patients participate in disease registries?

communityreply@lls.org — Tue, 09 Feb 2010 20:31:54 GMT

The Leukemia & Lymphoma Society (LLS) advocates for patients to participate in life-saving research in clinical trials. Clinical trials provide important data about carefully selected patient groups under controlled conditions. Another important way that patients can help the medical community to unlock causes, familial patterns and treatment trends is to take part in disease registries. These are comprehensive databases of disease and treatment information, for specific time periods and populations.

The databases are often used to analyze and interpret data about a common diagnosis. For example, when a person who has chronic lymphocytic leukemia (CLL) provides his or her health information to a disease registry, comparisons can be made with other CLL patients. The intent might be to discover genetic patterns, learn about the effectiveness of specific treatments or track the ages at which CLL patients are diagnosed.  Before you agree to participate in a disease registry, you will receive written assurance about your privacy and other rights. Patient information is usually encoded so that your identity is concealed and your confidentiality is ensured. You can decide to stop participating at any time by notifying the disease registry.

LLS encourages people who have a blood cancer diagnosis to consider taking part in a disease registry. Since blood cancers are not common diseases, registries need to enroll as many patients as possible. It’s also important that disease registries include patients from all regions of the U.S. and from all walks of life. You and others living with a blood cancer can make a difference that will help the medical community better understand and treat blood cancers, giving patients hope now and in the future.

Learn more about disease registries, or find a disease registry with which you can share your health history. Rather talk with someone about disease registries on the phone? Give us a call at 1-800-955-4572.

LLS-funded researcher Brian Druker receives the Lasker~DeBakey Award

communityreply@lls.org — Tue, 15 Sep 2009 16:24:55 GMT

The Leukemia & Lymphoma Society (LLS) is proud to congratulate Dr. Brian Druker for receiving the prestigious 2009 Lasker~DeBakey Clinical Medical Research Award. Dr. Druker, along with Dr. Nicholas Lydon and Dr. Charles Sawyers, is receiving the award because of their discovery of and successful clinical trials with Gleevec®, a drug that benefits chronic myelogenous leukemia (CML) patients.

Dr. Druker received critical funding from LLS in 1995 for his research on the tyrosine kinase inhibitor, STI-571, later named Gleevec, through the Translational Research Program. He discovered that CML cells that had been taken from patients were killed by this inhibitor. In 1998, Dr. Druker was able to test Gleevec in clinical trials and 53 of the 54 patients who participated achieved normal blood counts.

Dr. Druker continued to receive funding, and in 2000 was awarded additional funds through LLS’s Specialized Center of Research (SCOR) program. In 2001, Gleevec was approved by the FDA.

Many CML patients, who once may have considered their diagnosis terminal, are now leading normal and healthy lives because of Dr. Brian Druker’s breakthrough research. LLS is proud to have funded this innovative research, and appreciates the valuable work that Dr. Druker continues to provide to our patients and their families.

Visit the Lasker Foundation website to learn more about the Lasker~DeBakey Clinical Medial Research Award, and watch this eight-minute video that highlights the important research of these three doctors.

Have a question about CML or Gleevec? Call the Information Resource Center at 1-800-955-4572 or send us an email.

National Young Adult Cancer Awareness Week

communityreply@lls.org — Fri, 10 Apr 2009 13:39:29 GMT

Ask around and you'll learn that leukemia is generally thought of as a childhood disease. A lot of people don't realize that many more adults than children develop leukemia and other blood cancers. What may be even more surprising to learn is how many people diagnosed with leukemia, Hodgkin lymphoma and non-Hodgkin lymphoma are young adults.

Yes, there's a population of young adults out there who have lives that include (alongside getting an education, dating, making career choices, getting married, having babies) chemo and radiation therapy, stem cell transplants, bone marrow biopsies and hair loss. A.K.A. life on the road to surviving cancer.

National Young Adult Cancer Awareness Week is raising awareness about the impact of cancer on young adults. Vital Options, a support and advocacy organization devoted to young adults with cancer, launched this annual event in April 2003. Since then, organizations like The Leukemia & Lymphoma Society (LLS) have partnered with Vital Options to keep spreading the word.

If you are a young adult with a blood cancer, we encourage you to take advantage of our many online resources including:

LLS Blood Cancer Discussion Boards - Connect with your peers for valuable input and support.
RSS News Feeds and Podcasts - Get news and audio on a daily basis in your RSS reader.
National Education Programs - Register online for free telephone education programs where you'll have the opportunity to ask questions of our guest speakers. We also have an extensive archive of past programs in this area of our website.
Free Materials - Our materials range from information on the different blood cancers, to ways that you can cope with a blood cancer diagnosis. They are free to download or order.
eNewsletters - Subscribe to any or all of our monthly eNewsletters containing valuable news and updates.
Search for Cutting-Edge Research - Make sure you're exploring all of your treatment options by taking advantage of this online resource.
Information Resource Center - Chat online or email an information specialist who can put you in touch with even more information and support and help you find out about cutting-edge research.

Want to get involved? Learn about our different events and ways to volunteer through our How to Help section on www.LLS.org.

More blood cancer patients need to participate in clinical trials

communityreply@lls.org — Thu, 26 Mar 2009 20:34:33 GMT

At February’s third annual Texas Forum on Blood Cancers, Louis J. DeGennaro, PhD and chief scientific officer for The Leukemia & Lymphoma Society (LLS), stressed the need for more clinical trials for blood cancer patients.

“Companies may have drugs on the shelf that are approved for other cancers and may work in blood cancers, but haven’t been tested because of lack of money and lack of enough patients,” said DeGennaro at the opening session, “Accelerating the Development of New Blood Cancer Therapies.”

In case you didn’t know, LLS is working hard on making sure that more clinical trials are available to blood cancer patients by way of the Therapy Acceleration Program, otherwise known as TAP. The goal of the program is to bypass some of the hurdles that have typically been in place, and to make sure that patients have access to the therapies they need sooner rather than later. The patient can still expect to receive high quality treatment – it’s just going to be there sooner, which can be critical for those who are living with fast-acting cancers.

Learn more about the LLS Therapy Acceleration Program on www.LLS.org and find out more about clinical trials at www.LLS.org/clinicaltrials. Read more about the Forum in Dallas at www.curetoday.com.

The Leukemia & Lymphoma Society Innovates for 60 Years

communityreply@lls.org — Tue, 13 Jan 2009 20:20:10 GMT

If you are a regular visitor to www.LLS.org you’ll notice that our logo has undergone a change in honor of our 60th anniversary. That’s right – in 1949 The Leukemia & Lymphoma Society (LLS) was created by a family who had lost their 16-year-old son to leukemia just a short five years prior. At the time they named the organization after their son, calling it the Robert Roesler de Villiers Foundation.

In the sixty years since first working out of a small office on Wall Street, LLS has become the leading nationwide organization in the fight against blood cancers. No longer are leukemia, lymphoma and myeloma considered almost fatal diseases as they once were in 1949. Through innovative efforts LLS has helped to significantly increase survival rates of these blood cancers, and remains committed to stay on the forefront in the following areas:

Research – Our new Therapy Acceleration Program allows us to help facilitate the rapid development of promising new therapies that might otherwise go undeveloped.

Patient Services – 80,000 inquiries about blood cancers, treatments, resources and other critical issues were handled by our Information Resource Center in 2008 alone.

Advocacy – We have championed the first legislation in the country to provide neuro-psychological testing for pediatric cancer survivors.

Fundraising – Team In Training® (TNT) has raised almost $1 billion for blood cancer research and patient services in the 20 years that it has existed, and continues to be a strong fundraising force with the active support of its participants.

We have created a special website dedicated to LLS’s 60th anniversary where you can learn more about the innovations we’ve made and the people we have directly impacted on this journey. Visit now at www.LLS.org/innovation, and you’ll discover how and why we’re on the cutting edge.

Has The Leukemia & Lymphoma Society helped you or a loved one? Tell us about your story on our online community. Note: You’ll need to create a free account in order to post your story.

Want to give back? Make a safe and secure online donation to help us continue our mission of eradicating blood cancers.

2008 at The Leukemia & Lymphoma Society

communityreply@lls.org — Fri, 12 Dec 2008 20:43:44 GMT

As with every year at The Leukemia & Lymphoma Society (LLS), our staff and volunteers work hard to provide the highest quality services and events as possible, as well as to advocate on behalf of blood cancer patients and fund critical research.

Here are some interesting highlights from 2008 to remind you of what we've worked to accomplish:

Our Patient Services group did it again by offering more than 20 free telephone education programs to patients, caregivers, and medical professionals around the globe. These programs featured expert speakers who talked about topics ranging from Advocating for Your Child's Learning Needs: Through Treatment and Beyond to Tomorrow's Therapies Today: Clinical Trials for Leukemia, Lymphoma & Myeloma. Find out what free programs are available for registration now by going to the National Education Programs web page now.
Speaking of clinical trials, LLS now supports a free clinical trial service that enables blood cancer patients to find clinical trials more easily. Patients can also call the Information Resource Center at (800) 955-4572 if they need assistance while using the system. Learn more about TrialCheck® at our website today.
Our local chapters have been hard at work in the communities they serve. The Chapter Education Programs reached 48,000 patients and caregivers in 2008. Our Family Support Groups, also a community-based program, reached 12,000 participants in 2008. Find out more about this program.
Aside from launching The Leukemia & Lymphoma Society Blog (this blog that you're reading right now), we also launched The Light The Night Walk Blog. Read about inspiring people and fundraising successes there.
LLS now offers more than 50 different up-to-date free booklets, fact sheets and brochures on blood cancer, treatment and support topics. Most are available in Spanish, as well. Browse our Free Materials section and download or order your free copies today.
LLS awarded a new Marshall A. Lichtman Specialized Center of Research (SCOR) grant to Beverly Mitchell, M.D., George E. Becker Professor of Medicine at Stanford University. She and her team will receive $1.25 million a year for five years, for a total of $6.25 million. Learn more about this award, and what Dr. Mitchell and her team are researching.

There's so much more that we've done over the last year (lots of events, new booklets and fact sheets, not to mention, introduce our new president and CEO, John Walter), and we're still going strong even as the year is coming to a close.

As we look to 2009, we realize that there's so much that we still need to be doing in the fight against blood cancers, but we can't do it without the support of our donors. We know that so many of you receive countless requests from other charities and non-profits at this time of year, but if you have been personally affected by a blood cancer then you understand the value of what The Leukemia & Lymphoma Society offers. Your secure tax-deductible online donation will help us to be able to continue to offer the services and events that are critically needed by patients, caregivers and survivors in 2009.

Every little bit helps. Donate to LLS today.

LLSpotlight: New video series about LLS

communityreply@lls.org — Mon, 01 Dec 2008 19:26:53 GMT

The Leukemia & Lymphoma Society (LLS) has created a new video series called LLSpotlight, which features a panel of LLS leaders being interviewed by correspondent Bill McGowan. The first video is now posted on our LLS channel on YouTube.

We created LLSpotlight to talk to you about how our organization has been able to move blood cancer research forward, and to tell you about our current efforts in the fight against blood cancers. Our first video, Why LLS? conveys an important message for everyone who has been touched by a blood cancer and any of you who are considering donating your valuable time or hard-earned money to LLS.

We plan on adding more videos in the coming months. If you have a Google or YouTube account you can subscribe to our channel and be notified when we’ve posted another video.

Why LLS?, and let us know what you think in the comments here or on YouTube.

As we near the end of this year, consider making a year-end donation to The Leukemia & Lymphoma Society online. It’s secure and tax-deductible.

A comprehensive look at The Leukemia & Lymphoma Society [Video]

communityreply@lls.org — Mon, 10 Nov 2008 19:46:54 GMT

The Leukemia & Lymphoma Society (LLS) is an extraordinarily busy non-profit. We’ve got patient programs, research funding initiatives, advocacy programs and so many events that it’s hard to decide which one (or ones) to participate in. Even for someone who works here, it’s hard to fully comprehend the breadth of work that we do on behalf of our mission to fight blood cancers.

We just posted our most recent video that gives the public a chance to see and listen to staff, including our CEO, John Walter, talk about what we’re doing in the fight against blood cancers. It's 10 minutes long and well worth the watch.

Also check out our great mission video that features real blood cancer patients and/or their families.

Share your thoughts in a comment below – did you learn something new about LLS through these videos?

Play2Cures – Play online casual games to fight cancer

communityreply@lls.org — Tue, 30 Sep 2008 14:46:52 GMT

**This program has ended**

Last week we launched Play2Cures, a website where you can help us raise $100,000 in 100 days by playing casual games. We launched in collaboration with PledgePlay, a company born out of father Jim Carol’s experience with dealing with his son, Taylor, being diagnosed with leukemia. Check out the video that talks more about Taylor's story.

So how does Play2Cures work?

Make a pledge. First you pledge any amount you prefer (minimum is $10) with your credit card – don’t worry your credit card information is secure. Each dollar you pledge gets you one Game Token, and one token can be used to play one game.

Play a game. Now that you have at least 10 tokens you can play one of five games: Putt Nutz (a little like miniature golf), SudokuSave (a cross between Sudoku and Tetris), Seven Solitaire (basic solitaire – but with fun music and animations), Ladybug (you need good eye-hand coordination) and MusicCatch (a bit mesmerizing).

Share those tokens. If you don’t think you can use all of your tokens or if you think a friend would enjoy playing games to cure blood cancers, you can email them and share some of your tokens.

Take a look at the leaderboard. If you’re the competitive type, swing by the rankings page to see how you compare to your fellow gamers.

Playing online casual games might not be your cup of tea (I’ll admit I’m pretty hooked on games myself), but remember you can still donate and give all of those tokens away to someone who does like to play. You can also show your support by posting one of our web badges on your website or social networking page.

There are also many other ways to support The Leukemia & Lymphoma Society. You can send us a donation, participate in one of our events, volunteer – and much more.

Learn more about Play2Cures via our press release and lls.play2cures.org.

Researchers: Apply for a Career Development Program Grant

communityreply@lls.org — Mon, 25 Aug 2008 16:01:57 GMT

Each year The Leukemia & Lymphoma Society (LLS) awards research grants through the Career Development Program (CDP) to professionals who do important research related to cancer, including blood cancers. This research is critical in improving cancer treatment, and potentially in cancer prevention.

If you are a researcher and would like LLS to fund your research, visit our CDP webpage where you can learn more about what we award, as well as details on what we need from you.

Here are a few details:

Your letter of intent (required) is due by 3:00pm ET on September 15
Full applications are due by 3:00pm ET on October 1.
We will use proposalCentral for both the letter of intent and full application.

For more information, including guidelines and instructions, visit the CDP webpage.

It’s easier to find clinical trials for blood cancer patients with TrialCheck®

communityreply@lls.org — Tue, 12 Aug 2008 20:19:45 GMT

Exciting news! On August 7, 2008 The Leukemia & Lymphoma Society (LLS) announced the new TrialCheck® service which was launched collaboratively with the Coalition of Cancer Cooperative Groups.

This is great for a couple of reasons.

First, we support clinical trials as being one of the most viable treatment options for blood cancer patients. Clinical trials have gotten a bad rap, but the truth is that participation in research studies provides patients with access to treatment that is at least as high quality as standard care. Many patients who are involved in clinical trials also say they are glad to have the opportunity to help other cancer patients.

Second, we're doing this because we're interested in making it as easy as possible to find cancer clinical trials near you. Clinical trials aren’t for everyone, but if you are interested in exploring this option it’s literally just a few keystrokes and clicks of the mouse to get to the information you need.

So how does it work?

Once you are on the TrialCheck® website, you will be prompted to fill out a short questionnaire. This will tell the system what clinical trials to display for you in the final search results.

Your results will be displayed after you click the “Show Results” button. If you choose to enter your zip code, the clinical trials that are closest to that zip code will display first, making it easy to find convenient options if distance is a concern for you.

You can also save your search results so you don't have to do the same search again; all you have to do is register. You can also email the results to others.

Not sure what a clinical trial is, or concerned it might not be for you? Visit our Clinical Trial Service webpage to learn more about the ins and outs of clinical trials.

Visit the TrialCheck® website today to find a clinical trial near you.

Have you participated in a clinical trial before? Is it something you would do again if you had to do it all over?

From the Action Center: Clinical Trials in Danger - Urge your member of Congress to Support HR 2676

communityreply@lls.org — Tue, 29 Jan 2008 21:35:43 GMT

Currently, many adults do not participate in clinical trials because insurance companies refuse to cover routine care expenses for patients who choose to enroll in a clinical trial. Increasing participation in clinical trials is one of the best ways to speed new cures to the doctor’s office, the hospital bedside, and the infusion room. Fortunately, Congresswoman Deborah Pryce has introduced a measure, H.R. 2676, which would require insurance companies to cover routine care expenses for patients enrolled in clinical trials. However, Congresswoman Pryce’s measure needs your help. Please contact your member of Congress to urge them to cosponsor H.R. 2676.