PATIENT SERVICES

Society Spotlight: Information Resource Center

Since 1997, the Society’s Information Resource Center (IRC) has empowered patients and their families with knowledge and support.

“IRC staff understand that a blood-cancer diagnosis can leave patients and their loved ones feeling confused and overwhelmed,” explained Anita Welborn, IRC director. “We’re here to support patients through the challenges of their diagnosis.”

The IRC provides the most accurate and current information on leukemia, lymphoma and myeloma. Information specialists educate patients, families and caregivers on how to communicate with their healthcare teams – and connect with community and national resources – in order to receive quality treatment and support services.

IRC specialists offer numerous free services (in more than 140 translations). They include:

• Disease- and treatment-related information on blood cancers
• Help in finding a clinical trial
• Emotional support
• Provide Society booklets and other published materials

IRC specialists - master's level social workers and public health educators - are available to take calls Monday through Friday, 9 a.m. to 6 p.m. ET. Just dial (800) 955-4572. If you prefer email you can contact a specialist at infocenter@LLS.org .

You may also chat online with a specialist. Click the “Live Patient Help” button on the top right of the www.LLS.org homepage Monday through Friday, 10 a.m. to 5 p.m. ET.

For local information, patients can contact the patient services managers at the nearest Society chapter. Call the IRC or visit www.LLS.org to find a local chapter.

Upcoming Telephone Education Programs

April

• Wednesday, the 4th, 1 p.m. ET: Myeloma Treatment: Exploring Your Options
  This program features Asher A. Chanan-Khan, M.D., assistant professor of medicine, Division of Lymphoma/Myeloma, Roswell Park Cancer Institute. Participants will have an opportunity to ask Dr. Chanan-Khan questions. Register online.

RESEARCH

Society-Funded Researchers Announce Progress in Graft-Versus-Host Disease

Meet Dr. Aaron Schimmer

Beginning with this issue of eNewsline, the Society will profile scientists on the cutting edge of blood cancer research whose work we are proudly supporting. This month, we’d like to introduce Aaron Schimmer, M.D., Ph.D., F.R.C.P.C. Dr. Schimmer is a staff physician and scientist at Princess Margaret Hospital, Ontario Cancer Institute, in Toronto. He is the recipient of a Society Translational Research Program (TRP) grant.

Dr. Schimmer, could you describe your project?
Sure. We’re looking at the X-Linked Inhibitor of Apoptosis Protein (XIAP) in acute myelogenous leukemia (AML), a deadly blood cancer. High levels of XIAP are an important cause of resistance to chemotherapy in AML.  The TRP grant will enable us to better understand the role of XIAP in normal and leukemia cells and help us develop treatments that can inhibit the protein to kill AML cells and help patients.

What's novel or innovative about your approach?
Well, we’re testing a small molecule that we identified as an effective XIAP inhibitor by screening a library of 1 million compounds. And we’re testing another, DNA and RNA-based (antisense) inhibitor that could be the first such drug to help AML patients.

How will the project one day help patients?
In two ways. We’re conducting a trial of the XIAP antisense as a potentially useful adjunct to chemotherapy. We also hope that our small molecule XIAP inhibitors will soon be ready for testing in a clinical trial and that one (or both) of these will ultimately be developed into a novel therapeutic agent for AML.

What other projects are you excited about and believe one day will help patients?
I'm interested in identifying drugs used previously for other health conditions that may have unrecognized anti-cancer properties. Using automated and robotic equipment, we recently identified an appetite stimulant that prevents cells from dividing and that kills leukemia and myeloma cells. We're moving this compound into preclinical development. As it has been used previously for other indications, we hope to advance it rapidly into clinical trials.

What are some of your hobbies and non-research interests?
When not in the clinic or the lab, I enjoy spending time with my wife and two children, ages 8 and 4.  When the opportunity is available, my wife and I enjoy skating, cycling, running and more off-beat sports such as indoor rock climbing and trampolining.

ADVOCACY 

The Health Insurance Portability Crisis

Currently, 46 million American are uninsured, and the number is growing.  Although many factors contribute to the large number of uninsured, people with preexisting conditions, including blood cancers, face significant challenges in finding affordable and meaningful health coverage.

Moreover, people with preexisting conditions in the group-health insurance market are often trapped in “job lock” – afraid to leave their current employer for fear that their health status will preclude them from access to health insurance that meets their needs. This means that what’s covered is not “portable” but will change, sometimes dramatically, from job to job.

To ensure that all individuals have access to affordable and meaningful health insurance coverage, the Society has joined with other patient advocacy organizations to urge policy makers to reduce or eliminate the large number of uninsured and underinsured.

We are asking that:

• Health insurance be affordable, accessible and portable for all Americans
  
• Health insurers/plans be prohibited from limiting coverage, applying preexisting condition limitation periods or carving out certain benefits or services because of the application of provisions that punish individuals for having preexisting conditions
  
• Health insurance and comprehensive coverage be available immediately without waiting, preexisting condition limitation and other periods

For more information about the Society’s advocacy efforts, please visit the “Advocacy” section at www.LLS.org .

CAMPAIGNS 

Nike Women’s Marathon Moves to Head of the Pack

The Nike Women’s Marathon, A Race to Benefit The Leukemia & Lymphoma Society, has emerged as Team In Training’s single biggest annual event.  

The annual race, scheduled for Oct. 21 in San Francisco, has become so popular that the half marathon sold out in just 10 ½ hours and the full marathon sold out in four days. Luckily, Team In Training^® (TNT) still has slots for both races, and is getting ready to begin recruiting participants in April.

“The fact that the event sold out so quickly is amazing,” said Nancy Klein, senior vice president, Society Marketing Communications. “It’s like a rock concert.”

The annual event culminates a weekend full of great, race-oriented events. More than 20,000 runners and walkers are expected – 5,000 from TNT. The course itself is one of the most beautiful in the nation, starting in downtown San Francisco and continuing past the famous TransAmerica building, Fisherman's Wharf, Aquatic Park, Ghirardelli Square, Fort Mason, Marina Green and more. Participants enjoy breathtaking views of Alcatraz and The Golden Gate Bridge.

What’s more, the Nike Women’s Marathon raises needed funds for blood cancer research and patient services. This year, more than 118,000 Americans are expected to be diagnosed with leukemia, lymphoma or myeloma. That’s one patient every five minutes. Sadly, every 10 minutes a man, woman or child loses the battle against blood cancer.

Since TNT’s inception nearly 20 years ago, 320,000 participants have raised more than $750 million to help the Society fight blood cancers. TNT is the world’s largest endurance sports training program, helping athletes of all levels to run or walk a whole or half marathon or participate in a triathlon or century (100-mile) bike ride. Participants raise funds for cancer research and patient services in exchange for training, support and lodging and airfare to the event of their choice, including Nike. 

To find out more Team In Training and how to get ready for the Nike Women’s Marathon, please visit www.teamintraining.org , call (800) 482-TEAM or contact a Society chapter near you.

New School & Youth Video Inspires Children

A new Society video will help educate students about blood cancers and inspire them to raise funds through the Society’s School & Youth^SM Programs. The new video features footage of successful School & Youth participants, honored patients as well as insights into blood cancers and what the Society is trying to do to cure them.

Schools featured include Glen Ridge High School, in Glen Ridge, NJ, and Mark Twain Intermediate School, in Brooklyn, NY. Society chapters are encouraged to show the video at kick-off assemblies and informational meetings, said Kristy Lysik, senior national manager, School & Youth Programs. The video will be unveiled this July at School & Youth’s national  training.

“We’re very excited,” said Lysik. “Chapters want a visual tool that motivates participants and also educates them about our mission. I think we’ve succeeded.”

School & Youth Programs include the popular Pennies^® for Patients and Olive Garden’s Pasta for Pennies programs, in which K through 12^th grade students collect spare change and other funds on behalf of the Society’s mission. Winning classrooms earn great rewards.

Last school year, more than 9 million students from over 18,000 schools raised more than $15 million through School & Youth Programs. Since its inception, School & Youth Programs have raised more than $100 million to help the Society cure blood cancers and improve the quality of life of patients and their families.

For more information on School & Youth Programs or to get a local school involved, please visit www.schoolandyouth.org or contact a local Society chapter.