Research Wins the Game
Austin Supporter Debby Cox Explains

Sometimes timing is everything.

"If I had been talking to you a year ago, I would be telling you that you have three to five years to live and that we would be doing a lot of different things to keep you alive," Debby Cox's doctor told her after diagnosing her with chronic myelogenous leukemia (CML) on March 20,2002.  "But today I am happy to tell you that there is a great new drug: Gleevec^®," the doctor continued.

Gleevec is "the magic pill" developed by The Leukemia & Lymphoma Society (LLS) - funded researcher, Brian Druker, M.D., of Oregon Health and Science University Cancer Institute, thanks in large part to hundreds of generous LLS donors whose financial support helped keep his research going. Cox, of Austin, Texas, also feels strongly about the LLS research she and her husband Rick support. They recently made a commitment of $30,000 to support a portfolio of researchers investigating CML at all levels from basic science to therapy.

From her initial diagnosis in 2002 to the decision to make a major gift to research, there were many years of involvement. Following her diagnosis, Cox began to learn everything she could about leukemia. Not surprisingly, everywhere she turned, there was The Leukemia & Lymphoma Society. 

She saw a commercial on TV advertising the Light The Night^® Walk and decided to raise money and attend the walk with her husband and her daughter, Amanda. Light The Night Walk is LLS's annual walk held in fall in communities across the country to pay tribute to lives touched by cancer. Participants carry illuminated balloons - white for survivors, red for supporters and gold for those who are walking in memory of a loved one.

"This lady who I had never seen before walked into our office and said I have some money that I raised for last night's walk and I need to give it to you," says Jane Sierra, the former walk director for the Central Texas Chapter of LLS. "Inside the bag was $6,000 that Debby had raised completely on her own." By the next year, she was on the board and co-chairing Family Teams for the Walk.

Although Cox loves Light The Night Walk, for her it is all about the research.
 
"Each year it seems that there are more and more of the white balloons of survivors," she said. "Research is where we win the game." 

She also feels a personal obligation.

"Someone else contributed to create Gleevec and now my husband and I want to be part of the next pill to help the next person. I already know that Gleevec will not work forever for me, so part of it is selfish and part of it is knowing that something good will come of it for others."

Another aspect about LLS that Cox cherishes are the close friendships she has formed with her fellow board members and the staff.

"There is a true sense of stewardship of both human relationships and funds," she says. "I could only give to an organization that I felt was completely genuine and transparent."
 
Elizabeth Muenzler, executive director of the Central Texas Chapter of LLS, describes Cox this way: "She and her husband honestly do not view themselves as 'philanthropists,' but rather small cogs in a big wheel where everyone contributes to make the world a better place. She is a humble, fun-loving person who feels blessed to be able to give when in fact we are the ones who are lucky to have her." 

Cox sums it up more simply: "It's our version of 'paying it forward.'"

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Regatta Season is Underway

It's all hands on deck for the 2009 Leukemia Cup Regatta season, which is well under way, and across the country sailors' commitment to the mission is as strong as ever.

In New Orleans, Chuck Stuckey, 25, participates in the program in a slightly unconventional way. On March 22, he kiteboarded across Lake Ponchartrain to honor his father, who died from acute myelogenous leukemia. He raised $12,000 to support The Leukemia & Lymphoma Society's blood cancer research and patient services initiatives.

Grace Palmer, 16, of Savannah, Georgia, sails to honor her grandfathers, both of whom have multiple myeloma. Over the four years she has been participating in the Leukemia Cup Regatta she has raised $29,000. The Savannah Yacht Club will hold its Leukemia Cup Regatta the weekend of September 19-21.

"I plan to participate in LCR for as long as I am able to," says Palmer. "My knowledge about sailing is something I will always have and be able to use. It isn't like other sports that you can only be good at for a certain amount of time until you get too old. Sailing in the Leukemia Cup Regatta has been one of the best experiences of my life. I think it is very important to raise money for a cause. As a young person, fundraising is one of the most effective ways that I can help find a cure for these diseases."
 
Monroe, Washington police officer Ken Sahlstrom, 57, sails in memory of his son, Jonathan, who lost his battle to leukemia in 2006 at the age of 17. He also sails to honor his nephew, Noah, recently diagnosed with cancer. Sahlstrom is joined by two fellow officers, Reid Weaver, who lost his son Jackson to leukemia in 2006, and Rick Dunn, whose son Callahan, is a leukemia survivor. Both Callahan and Noah will join the men in this year's sail. The Elliott Bay Marina in Seattle will hold its Regatta on June 6. In the four years that Sahlstrom and his fellow police officers have participated in the Regatta they have raised more than $11,000 to help fund lifesaving research.

Lisa Thorndike, 68, of southern New Jersey, was diagnosed in 1993 with solitary plasmacytoma which progressed to multiple myeloma. She had two stem cell transplants in 1997 and was in remission for 10 years. No longer in remission, Thorndike is either going to participate in a clinical trial or have a third stem cell transplant. Despite her battles with the disease, Thorndike has been undaunted in her dedication to the Leukemia Cup Regatta. Her regatta fundraising has resulted in $230,000 to help find a cure! Thorndike is eligible for her 11th Fantasy Sail, taking place in October in San Francisco. She will participate in her 14th Leukemia Cup Regatta the weekend of June 13 and 14 at the Keyport Yacht Club in New Jersey.

For more information about the 2009 Regatta series, please call 888.HELP.LLS or visit www.leukemiacup.org.


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Leukemia Cup Regatta Chairman Gary Jobson in Line for US Sailing Post

Champions of Hope

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This Mother's Day Celebrate a Mother's Love
Honor Your Mother with a Tribute Gift to The Leukemia & Lymphoma Society

Kendall Kollection - Kicking off its Second Year

National Capital Area Chapter Donates Webcams Enabling Hospitalized Children to Connect with Classrooms, Teachers and Friends

This year, when six year-old Becky Wilson of Arlington was about half way through first grade and her leukemia was in remission, her immune cell count dropped to a low level. It became too risky for her to attend school or be with friends at Jamestown Elementary School in Arlington.

But thanks to a new program at Georgetown made possible by The Leukemia & Lymphoma Society's National Capital Area (NCA) Chapter, Becky was able to stay in contact with her teacher and classmates until she is able to return to school via a new project at Georgetown University Hospital that uses laptops and webcams to link kids from the hospital to their classrooms, teachers and friends. For example, during one session, Becky was able to talk to her classmates about recent assignments in reading, and participate in discussions about how the Great Wall of China was built and weather disasters like tornadoes. Becky followed along and took some notes. The children let her know they made her a box of Valentines.

The NCA Chapter conceived of the idea and donated six laptops with built-in webcams for the children at Georgetown and six webcams for parents to take to their child's school for classroom setup. This program is a first for the local LLS chapter. The gift of the equipment was made possible by the generous donors who attended the 2008 Bobby Mitchell TOYOTA Hall of Fame Golf Classic last summer. The event is led by co-chairs Tammy Darvish of DARCARS, Todd Heavner of Enterprise rent-a-car and Bobby Mitchell.

"The National Capital Area Chapter of The Leukemia & Lymphoma Society is thrilled to be able to donate these webcams to the children at Georgetown's Lombardi Cancer Center," says Donna McKelvey, Executive Director of the chapter. "We are so grateful to our donors from The Bobby Mitchell TOYOTA Hall of Fame Golf Classic for making this technology available so that children who are taken out of school due to cancer treatment can truly feel like they are, once again, connected to their classroom so that they can continue their education alongside their classmates."

Pediatric Hematology/Oncology director Aziza Shad, M.D. said, "Having this technology available is really a turning point for children with cancer and other serious illnesses. When some of our children are newly diagnosed with leukemia they need to be out of school for one to three years because they are immune compromised from their chemotherapy. They miss their teachers. They miss their friends. These laptops with webcams provide a perfect way for them to participate in a lesson and stay connected with their school. We are very grateful to The Leukemia & Lymphoma Society for donating the equipment to make this possible."

Mary Lane, L.I.C.S.W., clinical social worker who helps children navigate school and educational issues once they start cancer treatment at Georgetown said it is psychologically good for children to keep in contact with their teachers and friends.

"They can continue to feel connected even if they're not there. Their school and their friends are often a very positive part of their life and it's important to maintain those positive connections."

• Coping With Childhood Leukemia and Lymphoma
  
• Cómo enfrentarse a la leucemia y el linfoma en los niños
• Learning and Living with Cancer
  
• Aprender y vivir con cáncer
• Long-Term/Late Effects of Treatment for Childhood Leukemia or Lymphoma
  
• Efectos a largo plazo y tardios del tratamiento de la leucemia o el linfoma en ninos

• LLS Discussion Boards
• Find Support Groups
  

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LLS Bestows First Annual Award to Oncology Social Worker
from Oregon

The Leukemia & Lymphoma Society is recognizing the outstanding career of Nancy J. Boyle, M.S.W., L.C.S.W., of Oregon Health & Sciences University (OHSU), with the first LLS Hematology-Oncology Social Worker of the Year Award. The award will be presented on May 7 at the annual Association of Oncology Social Workers conference in Savannah, GA.

In her 23-year career, the past 16 spent at OHSU, Boyle has played an instrumental role in supporting the psychosocial needs of both pediatric and adult blood cancer patients requiring bone marrow and stem cell transplantation. She is sought out for her expertise on the topic throughout the state and across the country.

Among the achievements for which she is being recognized is the implementation of mandatory psychosocial screening by a social worker for stem cell and bone marrow transplant patients. Boyle developed a multi disciplinary working committee and within six months was overseeing a program that was successfully transitioning patients through the palliative care process.

Boyle has partnered with LLS on numerous educational and patient support programs, and regularly coordinates with LLS on patient financial needs, helping to create a seamless process to get patients the assistance they need for transportation and housing. She has played an invaluable role in helping underinsured patients find unrelated donors for life-saving stem cell transplants.

"There were many candidates for this award and each one of them was so qualified and dedicated to the patients they serve," said Hildy Dillon, senior vice president of patient services for LLS. "Nancy's work has been exemplary over her entire career and we received many glowing letters of recommendation submitted on her behalf. This award is testimony to how important social workers are in supporting patients when they are faced with a devastating diagnosis. This is why LLS is recognizing the critical work that social workers like Nancy Boyle perform every day."

The colleagues who submitted letters on her behalf also unanimously agreed that she not only has established herself as an exceedingly accomplished clinician, but as a leader among social workers at OHSU, and across the state and country. Nancy is valued by her colleagues and patients for her wisdom, insights and sensitivity, and many noted that she tirelessly approaches her job with grace, humor and compassion.

"I am overwhelmed by this honor," said Boyle. "I know that I have a great deal of wonderful colleagues who would also be perfect candidates for this award. I am grateful for the recognition and realize that it is not lightly bestowed. I hope that I can continue to reflect the values of AOSW and LLS, two organizations that have been instrumental in my development as an oncology social worker."

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Upcoming Telephone Education Programs
(all programs are free)

What: Myeloma: Understanding Drug Therapy and Stem Cell Transplantation
When: Thursday, May 14, noon - 1:30 p.m. ET
Guest Speaker: Seema Singhal, M.D., Division of Hematology/Oncology, Northwestern University

Register online

What: CML: Understanding Treatment, Monitoring Response
When: Tuesday, May 19, noon - 1 p.m. ET
Guest Speaker: Eric J. Feldman, M.D., New York-Presbyterian Hospital/Weill Cornell Medical College

Register online

What: Childhood Cancer Survivorship: Challenges, Strategies, Resources
When: Tuesday May 26, noon - 1:30 p.m.
Guest Speaker: Daniel Armstrong, Ph.D, University of Miami Miller School of Medicine, Pediatrics, and Nancy F. Cincotta, M.S.W., .L.C.S.W., A.C.S.W., B.C.D.,Psychosocial Director, Camp Sunshine, Casco, Maine.

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Featured Resources

Funds are available now!

Is it difficult or impossible for you to afford medicine co-pays or your health insurance premiums?

Funds are available for approved patients with chronic myelogenous leukemia (CML) who have a household income at or below 500% above the US federal poverty guidelines. LLS is changing lives by extending a helping hand when patients need it the most.

Just ask Joe, a recent Co-Pay Assistance Program recipient who has Medicare Part D prescription coverage. "Without the help I have received from LLS, I wouldn't have been able to afford my lifesaving medicine," says Joe. Julie, another patient with CML who has benefited from the program, says, "My husband has been laid off from his job.  The money has helped so much, especially now with the economy the way it is. So my advice to others is to check out the program and apply!"

For more information, call 877-LLS-COPAY (877-557-2672).

You can also go online to www.LLS.org/copay, or send an e-mail to copay@LLS.org.

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NEW National Education Series Web Pages

Announcing the launch of our NEW National Education Series pages for lymphoma, leukemia, myeloma, MDS and survivorship on our website. These new pages add a fresh new look and will be easier to navigate for the user. We welcome you to browse around these new easier friendly pages.

• Lymphoma
• Leukemia
• Myeloma
• MDS
• Survivorship

New Section of Website

We have added a new section to our Childhood Blood Cancers page on juvenile myelomonocytic leukemia, which includes basic information about the disease and links to the JMML page and the Chronic myelomonocytic leukemia and Juvenile myelomonocytic leukemia fact sheet.
 
The updated page is live now. We invite you to take a look at your first opportunity.

Featured Publications

Myeloma Publications

• PS39 Myeloma
  Details about symptoms, subtypes, diagnosis, treatment, side effects, research, resources.
• PS29 Mieloma SPANISH
• PS49 Myeloma: A Guide for Patients and Caregivers
  Basics about symptoms, diagnosis, treatment, side effects of treatment, research, resources.
• PS42 Mieloma: Guia para pacientes y las personas que los cuidan

CML Publications  

• PS31 Chronic Myelogenous Leukemia
  Details about symptoms, subtypes, diagnosis, treatment, side effects, research, resources.
• PS75 Leucemia mielogena cronica SPANISH
• PS72 CML: A Guide for Patients and Caregivers
  Basics about symptoms, diagnosis, treatment, side effects of treatment, research, resources.
• PS73 CML: Guia para pacientes y las personas que los cuidan SPANISH
• PS71 My CML Tracker
  Explains disease monitoring; tracker page for noting appointments, test results, side effects.
• PS30 Mi Registro de CML SPANISH
  Detailed disease descriptions, symptoms, diagnosis, treatments, research and resources.
  

Treatment Related Publications

• PS40 Blood and Marrow Stem Cell Transplantation
  Details about stem cell transplants, donor matching, treatment of potential complications.
• PS65 Trasplante de celulas madre sanguineas y de la medula osea SPANISH 
• PS44 Blood Transfusion
  Information on blood cells, safety issues, potential complications and blood donation.
• PS12 Understanding Clinical Trials for Blood Cancers
  How clinical trials are planned, organized and monitored, study types, safety, eligibility.
• PS43 Understanding Drug Therapy and Managing Side Effects
  Drugs, drug administration, how they affect the body, side effects, questions to ask.
• PS76 Farmacoterapia y manejo de los efectos secondarios SPANISH
• PS41 Understanding Lab and Imaging Tests
  Information about blood cell counts, diagnostic and prognostic tests, questions to ask.
• PS53 Informacion sobre las pruebas de laboratorio y de imagenes SPANISH
  

We're pleased to highlight a new LLS blog post from our Web site, www.LLS.org, every issue. This month:

Introducing the LLS Blood Cancer Discussion Boards!

Does your child have cancer? Find out about our many resources for parents

Get Into the Nike Women's Marathon with Team In Training

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ACT NOW! Urge Congress to Co-Sponsor Access to Cancer Clinical Trails Legislation TAKE ACTION

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