Finding Love at the Walk

Everyone finds love in different ways. Some find it in college.  Others in bars.  More than you think find it online. Lauren Muehl, of Manhattan, says she found it through her Dad. In 1997, her father, Charles G. Muehl, died of leukemia. Then, in 2003, Muehl saw an email about the The Leukemia & Lymphoma Society's (LLS) Light The Night^® Walk at the Brooklyn Bridge and joined the fight against cancer. 

"I didn't want others to lose what I lost," she recalls. "Little did I know what I would gain that night." 

That night Muehl met Antoine Munfa.

"Antoine and I both went to college at Yale. We probably crossed paths hundreds of times, but we didn't meet until that night," says Muehl. "Two and a half years later, Antoine got down on one knee in front the lights of the Eiffel Tower, and asked me to marry him. To see the sparkle of the Eiffel Tower and the diamond brought back another set of 'bright lights' - the ones that lit up the sky the night we met at the Light The Night Walk. And the light that guided me to Antoine - my Dad. And although my Dad wasn't there in the flesh, I knew he was there in spirit - continuing to influence me as he always has done."   

Muehl, 29, and Munfa, 28, married in New York City on June 14, 2009.

Visit www.lightthenight.org to learn about walks in your area.


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Hodgkin Lymphoma Survivor Joined by Sister, Mom at Nike Women's Marathon

Marcella Marcheschi was 26 when she heard the words that would forever change her life.

"I don't think words can explain what it feels like to be told you have cancer," says Marcheschi of learning of her diagnosis of Hodgkin lymphoma in January of 2008. "All of a sudden I wasn't a young healthy 20-something anymore. I had something in my body killing me."

A grueling regimen of chemotherapy, radiation and steroids was a test of endurance, but finally knocked out the cancer.

"I did my best to keep a positive attitude, but losing my hair did take its toll," recalls the San Francisco resident. "There's just something about waking up and all of the hair on your body is gone. Up to that point you know you're sick, but you can't see cancer on the outside so it's easy to pretend like everything is ok. But when you look at yourself in the mirror and see a bald head I think I speak for most cancer patients when we say that is the moment you feel like you start to lose yourself to this disease."

A family friend directed her to The Leukemia & Lymphoma Society (LLS) for help and support. "LLS was a great resource and gave me some really helpful information." Marcheschi soon learned about LLS's Team In Training^® (TNT), the world's first, biggest and best sports training and fundraising program, and before she knew it, one of her friends had signed on to do a marathon in her honor. Then more friends, family members and coworkers began doing events in her honor. Marcheschi became an official honoree of TNT and was volunteering at events and sharing her story. She made a commitment to participate in an event herself, as soon as she regained her strength.

June 2009 marked the one year anniversary of the completion of Marcheschi's treatments. "What better way to celebrate one year of remission than to finally get out there and become a TNT participant?"

Marcheschi will be joined at the Nike Women's Marathon and Half Marathon, a Race to Benefit The Leukemia & Lymphoma Society, in San Francisco on October 18, 2009, by her sister, Gabriella, 30, also of San Francisco, and their mother, Maria Marcheschi, of San Mateo, Ca. They will be running the half marathon.

"I've never run in my life but I couldn't think of a better way to push myself to do something new and celebrate my health," says Marcheschi. "I heard about the Nike Women's Marathon from several TNT participants that have run it in the past. Everyone talks about what a great race it is and the incredible presence LLS has in it."

Marcheschi says she and her family feel an overwhelming desire to give back. "We're all so thankful for LLS and all the amazing things that have been accomplished through TNT. There's no doubt in my mind that I'm here today because of LLS and I will forever be grateful to the people who make the organization what it is. Cancer is scary and devastating, but TNT has proven that together we have the power to not just save more lives but ultimately we have power to potentially change the prognosis of cancer forever."

Visit www.teamintraining.org to learn more about TNT.

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Walk 13.1 Miles in Sunny Florida and Help Save Lives

More than 38 million Americans consider themselves fitness walkers and more and more of those people are signing up to walk in marathons and half marathons, such as the inaugural 'Women's Running Magazine' Women's Half Marathon & 5K to benefit The Leukemia & Lymphoma Society on November 22, 2009.

The flat, fast race course winding through the scenic downtown St. Petersburg waterfront, through quaint communities, past historic buildings and museums, makes this an ideal venue for walkers, both beginners and experienced. And, with a generous time limit, the course is ideal for walkers.

The Leukemia & Lymphoma Society's (LLS) Team In Training (TNT), the world's first, biggest and best sports training program, is currently recruiting participants to walk or run the half marathon in St. Petersburg. As more endurance events have allowed walkers to join their ranks, TNT has grown to include more participants who are moved by the cause of fighting blood cancer but are more interested in walking a half marathon than running one.

Certified coaches provide walkers months of exceptional training, helping participants attain their goals. The program includes walk-specific clinics on race strategies and technique, nutrition and hydration, and gear, and travel and lodging accommodations. As a member of TNT, participants also enjoy the camaraderie of a supportive team environment, and in return, raise money to help find cures for leukemia, lymphoma and myeloma and provide critical services to patients and their families.

"As a Team In Training coach of 15 years, I'm thrilled that we're now offering the "Women's Running Magazine" Women's Half Marathon because it's ideal for walkers of all levels," said Tom Dooley, national advisory walk coach for TNT. "It's a flat, walker-friendly, beautiful course that everyone can enjoy."

In addition to the half marathon in St. Petersburg, TNT is currently recruiting for other winter events, such as the Walt Disney World Marathon and Half Marathon, and the P.F. Chang's Rock 'n' Roll Arizona Marathon and Half Marathon. For more information call (800) 482-TEAM, visit www.teamintraining.org.


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2009 Man & Woman of the Year Campaigns Raises
More Than Ever

A record-breaking number of candidates enabled The Leukemia & Lymphoma Society's (LLS) 2009 Man & Woman of the Year campaign to raise more money than ever in the history of the program. Final fundraising numbers are still being tabulated, but with 461 candidates from 54 cities, the participants raised more than $7.7 million to support blood cancer research and patient services.
 
Out of those 461 candidates, one man, Dawson Grimsley, of Wichita, KS, and one woman, Ari H. Jones of Fair Oaks, VA., have emerged as the national winners of the Man & Woman of the Year competition for being the top fund raisers in the nation.
 
Grimsley, president and owner of Davis Moore-Auto Group in Wichita, raised $186,426, during the 10-week program in which every dollar raised counts as one vote, through a combination of auctions and sending emails soliciting donations from more than 100,000 friends, family and business associates. One of Grimsley's employees, Renee Dusek-Higgins, whose sister is a leukemia survivor, was Woman of the Year for the Kansas Chapter in 2007, and she nominated Grimsley this year.
 
"If you have ever thought about getting involved and want to make a difference, LLS's Man & Woman of the Year is an excellent way to do so," said Grimsley. "It is an amazing ride and an excellent way to give back. My team and I were relentless just like all the men, women and children fighting these blood cancers. Together we can make difference!!!"
 
Jones, a metastatic thyroid cancer survivor, and mother of two, achieved her accomplishment of raising $139,630 with the help of more than 40 other mothers, calling themselves "Moms for a Cure." They held a Rock 4 a Cure event, with live entertainment, silent auction and gift boutique. They held candy sales, and conducted massive letter-writing and email campaigns. And the Melting Pot, a national chain of fondue restaurants, donated 20% of sales to the cause.

"We were suburban moms looking for a way to impact the community," says Jones. "By joining forces, we were able to raise more than $139,000 to improve the lives of cancer patients and their families through yard sales, letter writing, selling candy bars and networking to moms around the country. In 10 short weeks we were able to raise enough money to touch thousands of lives forever. What an extraordinary experience!"

Jones added that winning both the National Capital Area title and the national title in a difficult economic environment proves that a grassroots organization can really make a difference.

"LLS is greatly moved by the generosity and hard work of the candidates and campaign teams during the 2009 Man & Woman of the Year campaign," said Blair Fogle, national manager of the Man & Woman of the Year campaign.  "Nearly 500 Candidates proved that with passion and determination, unbelievable things are possible for our mission. They are true community leaders. Thank you does not even begin to express our gratitude for their efforts." 

Candidates run in honor of the Boy & Girl of the Year, who are local blood cancer patient survivors and sources of inspiration to others.  For more information about the Man & Woman of the Year program, click here.
 

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Co-Pay Assistance for Patients with Myeloma

When Kalimah Jenkins, 44, of Atlanta, went to the doctor suffering from excruciating bone pain and fatigue in 2004, she was shocked by the diagnosis: myeloma, a blood cancer that starts in a plasma cell in the marrow and affects the bones, the blood cells and other organs in the body. In fact, the struggle being waged by Jenkins, who is African American, brings to light a little-known fact: myeloma is twice as prevalent among African Americans as it is among Caucasian Americans.

Jenkins had her next shock when she realized how expensive it would be to pay for her treatments. She is currently being treated with a drug called Revlimid^® , one of a growing arsenal of new therapies that have greatly improved survival rates for patients with this blood cancer. But the treatments are costly.

Fortunately, Jenkins' doctors at Emory Winship Cancer Institute informed her about a program offered by The Leukemia & Lymphoma Society (LLS) to help her pay for the drugs. LLS Co-Pay Assistance Program (www.lls.org/copay) provides up to $5,000 annually for qualified patients, to help pay for prescription drug co-pays and health insurance premiums.  Patients with private insurance, Medicare beneficiaries under Medicare part B and/or Medicare Part D, Medicare Supplementary Health Insurance or Medicare Advantage are eligible if they meet the income requirements.

In addition to myeloma, there are funds available for patients with other types of blood cancer.

"When they told me about this program, it was right in time because I was paying my insurance out of pocket and I was at the point of not being able to do it anymore," says Jenkins. "This program has helped me tremendously."

Cislyn Blackwood, 60, of Fresno, CA, has also benefited from the LLS Co-Pay Assistance Program. After being laid off from her job, and with her COBRA benefits running out, Blackwood, who also has myeloma, was desperate. Even with Medicare and supplemental insurance, she couldn't manage the costs of her treatments. In addition to being on and off treatment with Thalomid^® , another effective myeloma drug, Blackwood is taking medication to manage the pain in her bones, and the debilitating side effects of treatment, including neuropathy and exhaustion.

"I reached a point where I couldn't pay any more and the co-pay program helped me cover my bills," Blackwood said. "There are a lot of people who aren't taking their medication because they can't afford it and the co-pay program really helps with that."

"Receiving a diagnosis of a blood cancer is overwhelming and that devastating news can be compounded by an inability to afford the treatments," said John Walter, LLS's president and CEO. "LLS is trying to do what it can to help alleviate this burden for patients."

For more information visit www.lls.or/copay or call (877) LLS-COPAY.

Archived Myeloma Teleconferences

Emerging Therapies in Leukemia, Lymphoma & Myeloma
 
This program featured Gail J. Roboz, MD, Associate Professor of Medicine, Director, Leukemia Program, Weill Medical College of Cornell University/New York-Presbyterian Hospital, New York, NY and John P. Leonard, MD, Richard T. Silver Distinguished Professor of Hematology and Medical Oncology, Professor of Medicine, Weill Medical College of Cornell University/New York-Presbyterian Hospital, Clinical Director, New York - Cornell Center for Lymphoma and Myeloma, New York, NY and Robert Z. Orlowski, MD, PhD, Director, Myeloma Section, Associate Professor, Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, The University of Texas, MD Anderson Cancer Center, Houston, TX


Myeloma: Understanding Drug Therapy and Stem Cell Transplantation

This program featured Seema Singhal, MD, Professor of  Medicine, Director, Myeloma  Program, Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, IL.

Additional Myeloma Resources:

Myeloma Disease web page

Booklets
Myeloma (PS39)
The Myeloma Guide-Information for Patients and Caregivers (PS49)

Please visit the LLS Community Discussion Boards:
http://community.lls.org/community/bloodcancer/livingwith/multiplemyeloma

 
We're pleased to highlight a new LLS blog post every issue. This month:

• Myeloma Patients Should Apply for Co-Pay Assistance

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The Leukemia & Lymphoma Society Introduces a New Online Chronic Myelogenous Leukemia Resource and Tracking Tool

Measuring chronic myelogenous leukemia (CML) treatment response is important. The Leukemia & Lymphoma Society (LLS) is pleased to introduce My CML Tracker , an interactive online tool to help you track medical appointments, medications, side effects and test results. The program went online this spring and already has nearly 200 registered users. Information about My CML Tracker will be sent via email to approximately 9,500 health care professionals this month so that more patients and caregivers can learn about this important tool.

Tracking your response to treatment is extremely critical to ensuring that you are receiving the correct therapy.  Gleevec^® is the standard first-line therapy for newly diagnosed CML patients and Sprycel ^® and Tasigna^® are approved for people with CML who do not respond (or stop responding) to Gleevec, or for those who have intolerable side effects from Gleevec. However, many clinical trials are looking at other potential first-line treatments for CML. Clinical trials for patients with CML who do not respond (or stop responding) to Gleevec are investigating the benefits of increasing the dose of Gleevec versus changing therapy to Sprycel, Tasigna or investigational drugs. Approximately one-third of registrants to My CML Tracker report having discussed clinical trials with their physician. www.lls.org/cmltracker

Following are some additional CML Resources:

Webcast: Understanding CML: A Conversation With the Experts
This exciting Internet web cast begins with Brian J. Druker, M.D., discussing what's new for newly diagnosed patients with CML and continues with Neil P. Shah, M.D., Ph.D, discussing what's new for relapsed/refractory CML patients.

This is a complimentary online continuing education activity.

Booklets
Chronic Myelogenous Leukemia (CML)
CML: A Guide for Patients (PS72)
My CML Tracker (PS71)
CML Tracker Pages (PS71A)

Please visit the LLS Community Discussion Boards:
http://community.lls.org/community/bloodcancer/livingwith/cml


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Featured Resources

We'd Like to Hear from You!
Please give us your feedback after you read an LLS Publication by completing our evaluation:
LLS Disease & Treatment Publications - Survey for Patients, Family and Friends

Featured Materials

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The Leukemia & Lymphoma Society Blog is an interactive communication resource, updated regularly with news from LLS, as well as guest blog posts from those touched by blood cancer. LLS welcomes your comments on blog posts, as well as feedback to make this a better communication resource for you.

Here's the latest from the LLS blog:

Myeloma Patients Should Apply for Co-Pay Assistance

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Waldenstroms Macroglobulinemia RFA Information Packet

Waldenstroms Macroglobulinemia RFA Grant Application


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