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Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Wednesday, November 2, 2016

National Caregiver Month: How LLS Cares for the Caregiver


November is National Caregiver Month. Caregiving can be a lonely experience. Caregivers often don't feel they should be seeking support for themselves, but the best way to care for a loved one is to care for yourself. There are several ways to reach out to others who are in similar situations or have recently been through a similar experience.

LLS offers a number of helpful resources. For more information about any of the services listed below, contact an LLS Information Specialist.
  • Weekly Online Chat for Caregivers. Our live, weekly online chat provide a friendly forum to share experiences and chat with other caregivers. Each chat is moderated by an oncology social worker.
  • Patti Robinson Kaufmann First Connection Program. First Connection is a telephone support program that links you with a trained peer volunteer who has experienced a similar situation. Anyone with a blood-related cancer, as well as caregivers, is eligible to receive a call or visit. There is no charge for this program.
  • LLS Blood Cancer Discussion Boards. Meet your peers online and share thoughts and experiences on our Blood Cancer Discussion Boards.
  • Family Support Groups. LLS's Family Support Group program is open to patients, family members and caregivers. Volunteer nurses and social workers professionally lead the groups. Contact the chapter nearest you to find out about Family Support Groups in your area.

Getting Information:

Caregivers often become the primary "researchers" for disease information and support in an effort to assist the person with cancer and to help him or her better understand the disease, treatment options and side effects.

LLS offers free materials and services designed to simplify this search for information and support. Navigate the Resources for Patients and Caregivers tab at the top of this website for disease information, support and education resources, or contact an LLS Information Specialist.
Never hesitate to contact me directly if you have questions about any of these services or need help getting access to them.  
_______________________________________________________________________________

Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:
(972) 996-5905

Monday, February 29, 2016

Light The Night T-Shirt Competition


The 2016 Light The Night t-shirt competition starts today!  The North Texas Chapter is honored to be home to a past t-shirt design winner as well as a finalist and we would love to have another finalist from our area this year.  The winning entry will be on the front of hundreds of thousands of participant and survivor t-shirts at walk sites across the country this fall!

Below are the submission guidelines:

  • Design must be inspired by the Light The Night Walk (LTN) or the mission of The Leukemia & Lymphoma Society (LLS)
  • Design only the front of a plain t-shirt
  • Must visibly and clearly include the LLS/LTN logo lockup (example below)
  • Up to three different designs will be accepted, but they must be submitted as separate entries
  • Design must be wholly original

A full list of submission guidelines can be found here.   Once your design is completed, submit your artwork online here.

Designs will be judged on the following criteria:

  • Concept/originality
  • Captures the spirit of the LTN Walk
  • Striking and memorable design
  • Eye-catching and visible from a reasonable distance
  • Completeness of design - must be ready for print
Additional information about design specifications can be found here. 

All designs but be submitted by 2:00 p.m. (CST) on Friday, March 18th on the LTN Facebook page.

There are two rounds of voting.  During the first round, two designs will be chosen by a panel of LLS staff.  The two winning designs will then be posted on the Light The Night Facebook page where page fans can vote online.  The design with the most number of votes will be selected.

If you have any questions about the process, please contact your local staff at (972) 996-5926.

Our fingers are crossed for another North Texas finalist! 


Thursday, December 18, 2014

North Texas Patients Need YOUR Help


The North Texas Chapter of The Leukemia & Lymphoma Society (LLS) continuously strives to improve the patient experience for those diagnosed with blood cancers.  Recent feedback from a number of local patients has revealed a need for a resource packet at the point of diagnosis.  Here is where WE NEED YOU.  We need your feedback and advice to best arm newly diagnosed blood cancer patients with questions they should ask, resources they should seek out, products that help combat the impact of chemotherapy treatments, and more.

Please take this short 10 question survey  and share your knowledge with people who desperately need your help right now.

Share this survey with other blood cancer patients who may also be able to add advice for others.


Thank you for taking time to help fellow patients in North Texas.

Friday, August 29, 2014

Did You Know: Information Resource Center

North Texas Deputy Executive Director
Stacey Russell (left) with Executive Director
Patricia Thomson (right).
The Leukemia & Lymphoma Society (LLS) offers a number of support services for blood cancer patients and their families, one of which is the Information Resource Center.  Stacey Russell, the North Texas Deputy Executive Director, recently took advantage of the system and sent the following email out to the North Texas Staff.

"Hi everyone,

If you did not know or have not utilized the Information Resource Center (IRC) yourself, you should!  I called today to ask for assistance in finding out about a new clinical trial option for one of our long time supporters whose husband is battling myeloma.  I started with the IRC because they have an amazing clinical trial search right there online.  I tried navigating the website myself, however, it asks for personal information about the patient for eligibility and I did not have that information.  So I picked up the phone and called the IRC.  I have worked at LLS for 13 years and this is the first time I have ever called this line and I don't know why I waited - it was incredible!  

I spoke with Beatrice at the IRC about a couple clinical trial options.  She didn't have the exact information I needed (start date, application process, etc.) but said she would find out and get back to me.  She did and sent me two emails with two different clinical trial options and an article about more information on immunotherapy for myeloma.  Absolutely amazing!  Part of what we do everyday makes the IRC possible and what if, just what if, it works for them!  Miracles in the making, at least let’s hope!  

Thank you all!

Stacey"

We encourage you to reach out to the IRC if you have questions about any of the following:
- Clinical Trials
- Updated disease information
- Financial matters
- Education materials
- Patient education programs
- LLS discussion boards
- Help communicating with a member of your healthcare team

The IRC is open from 9:00 am - 9:00 pm EST for calls at (800) 955-4572.  If you don't feel like talking on the phone, you can chat online or send an email.  Interpreters are available in 170 different languages.

We encourage you to take advantage of this resource.

Monday, June 16, 2014

Amon G. Carter Foundation Gift






"I have come to realize that they who acquire wealth are more or less stewards in the application of that wealth to others of the human family who are less fortunate than themselves."
- Amon G. Carter

When Amon G. Carter came to Fort Worth in 1906, he brought with him a drive to make the sleepy North Texas town into a city that supported major industries, charities and families at the same time.  He wasted no time in merging two papers into The Fort Worth Star Telegram, investing in the oil and gas industry and attracting major corporations to set up shop in Fort Worth.  As he continued to accomplish his professional goals, Carter began to give back even more to the city he loved by establishing the Amon G. Carter Foundation.

The North Texas Chapter of The Leukemia & Lymphoma Society (LLS) is one beneficiary of this foundation and its generosity.  Earlier this year the foundation gave LLS a $25,000 grant to upgrade its internal donor and volunteer tracking systems.  "We recognize that as your [LLS] volunteer and donor base continues to grow it is essential to have appropriate software to assist in coordinating and tracking corporate sponsors and individual donors," says John H. Robinson, Executive Vice President of the Amon G. Carter Foundation.

The North Texas Chapter will use this grant money to make a multi-year investment in Salesforce and Cervis.  Salesforce will be used by employees chapter-wide to record and monitor gifts from corporations, individuals and teams in an effort to better steward and recognize their contributions.  Cervis is a volunteer management software program that will make it easier for LLS supporters to find and sign up for volunteer opportunities within North Texas.

"The Amon G. Carter Foundation understands the importance of having the best technology available when it comes to tracking and thanking our donors, and this grant will help LLS continue to grow here in North Texas," says Patricia Thomson, Executive Director of the North Texas Chapter.  "We appreciate their dedication to LLS and our vision of a world without blood cancers."

The Amon G. Carter Foundation also gave the North Texas Chapter a $25,000 grant last year for additional technology updates.  Many of the items purchased with that grant have helped raise the profile of LLS in North Texas.

LLS is thankful for the support of such a generous partner in the fight against blood cancers.

Thursday, June 12, 2014

Celebrating Fathers: Steve Gunner


"Any man can be a father, but it takes someone special to be a Dad."
- Anne Geddes


The North Texas Chapter is fortunate to have the support of a number of fathers who have a personal connection to The Leukemia & Lymphoma Society's (LLS) mission and share our drive to create a world without blood cancers.  Today we are pleased to introduce to you Steve Gunner.  He works relentlessly on behalf of LLS through our Light The Night Walk and Links Fore Leukemia Golf Tournament.  Read why below. 

What is your connection to The Leukemia & Lymphoma Society and its mission?
My connection is through my son, Nick Gunner, who fought Acute Myeloid Leukemia (AML) for almost two years.  After being diagnosed in June 2011 Nick underwent two stem cell transplant.  The first in November 2011 used his own stem cells and he was in remission for 10 months.  The second was with an unrelated donor in February 2013.  Nick fought for two months but his bone marrow could not recover and he passed away on April 14, 2013.

What motivates you to support The Leukemia & Lymphoma Society?
The memory of Nick.  My son was an amazing person and he lived life to the fullest.  He was a kind and generous person.  I know some of the things he did have inspired others to change the way they look at life and other people.  I will continue to honor him through my support of The Leukemia & Lymphoma Society's mission.

How has The Leukemia & Lymphoma Society helped you throughout your family's journey with blood cancer?
The people I have met through my connection with The Leukemia & Lymphoma Society have become friends and have helped myself and my family through the tough times, both while Nick was fighting and after he passed away.  Not just those who work at LLS but also the people we have met who were also touched by blood cancers.  Seeing and hearing these strong people relate their personal story or connection helped us to deal with our loss.  I will never be able to fully accept it, and I think about Nick every day, but that motivates me to continue to support the efforts of The Leukemia & Lymphoma Society.

What advice would you give to another family with a loved one that's been diagnosed?
I was surprised at how many other people were either touched by or dealing with similar blood cancer issues.  It helps to know that you're not alone and to know that others are praying and supporting you, your family and those stricken by the illness.

Friday, May 23, 2014

Donor Spotlight: Community Foundation of Abilene


The North Texas Chapter of The Leukemia & Lymphoma Society (LLS) covers more than 119 counties across North Texas.  The LLS staff logs quite a few miles each year traveling to cities that are not near the primary LLS offices in Dallas and Fort Worth.  Why?  Blood cancers are not limited to people living in major metropolitan areas.  We want to do our best to be a resource and support for people in ALL of our 119 counties.

This extensive travel and support for outlying markets is made possible by the generous support of some of North Texas' most prominent foundations.  Today we highlight Community Foundation of Abilene.  LLS just received a $2,650 grant from the Community Foundation of Abilene to further our work and outreach in Abilene and Taylor County.  The gift is to be used to assist children diagnosed with blood cancers and their families.

"We are pleased to support a program in our area that provides patient services to children with cancer," says Katie Alford, President of the Community Foundation of Abilene.  "It's hard to imagine what these families go through.  Having an organization provide support, education and financial assistance is critical for them to make it through such a difficult time.  We're glad that The Leukemia & Lymphoma Society is in our area providing this support."

We are thankful for the support the Community Foundation of Abilene is providing LLS and our patients in Taylor County.

To learn more about the service and support options offered by LLS, please visit our website.  Interested in learning more about the Community Foundation of Abilene?  Click here.

Monday, December 30, 2013

Mission Monday: January Education Programs



When a patient is diagnosed with a blood cancer their life changes dramatically in an instant.  It is not only their life that changes, but that of their family and friends.  The Leukemia & Lymphoma Society (LLS) understands and appreciates that a blood cancer patient does not tackle their diagnosis alone.  For that reason, LLS has created a series of different telephone and web education programs for patients and their support group that will help them along the rocky road to remission.

Below are two educational phone and web education programs that are FREE and available to you.  Please take advantage of this opportunity to learn more about ALL and Myeloma.

Adult Acute Lymphoblastic Leukemia (ALL)
Tuesday, January 14, 2014 from 1:00 to 2:30 pm (ET)
Dan Douer, MD, Memorial Sloan Kettering Cancer Center

Myeloma- Update on Research and Treatment
Tuesday, January 21, 2014 from 1:00 to 2:30 pm (ET)
Robert Orlowski, MD, PhD, MD Anderson Cancer Center



Friday, July 26, 2013

Freebie Friday: Meet Melissa Garner


My name is Melissa Garner, and I am the Patient Advocate Manager with The Leukemia & Lymphoma Society (LLS).

A grant from Baylor University Medical Center funds my unique position.  I work with patients and families, providing them with information about LLS and patient services, in addition to providing education and support groups.  I am on-site at Baylor to assist with any issues a blood cancer patient, or family member, may have.
What amazes me the most about this job, and what I feel is the most rewarding aspect of it, is being able to listen to people’s stories.  I am always amazed at the strength, resilience, faith, and hope that I see each week. 
While confronting what is often the scariest event in their lives (a blood cancer diagnosis usually followed by chemotherapy and a stem cell transplant), people more often than not show just how strong they truly are.
Of course, this doesn’t mean there isn’t a great deal of pain and vulnerability that goes along with it.  It just means that people find a place within themselves to connect to faith and hope too.
This is also very true for the caregivers as well.  Just today I talked to a caregiver who said, “My husband (the patient) has always been the strong one, not me.  I never was, until now. “
She is balancing a home life, young children, and being there for her husband at the hospital.  She has been here with him since April, and this is his second go at a stem cell transplant.  She shared with me how scared she felt, but at the same time, she knew she was surrounded by a strong faith and a support system of friends.  All of this gave her strength.
I get the honor and privilege of listening to people share stories like this all the time.  I feel their stories are such gifts to anyone who hears them.  I am better for hearing them. 
I also really want people to know that we at LLS are there for them throughout their blood cancer journey.  I typically will end my visit with them saying something like this:
"Please know that LLS is in your corner and that we are here for you.   Even if it’s a year from now or sometime down the road, please know that you can always call me and we will be there for you.  Even if it’s something we can’t answer for you directly, please know we will help you find out who you can talk to.  Just know we are here for you." 
When I say this, I see their faces brighten and a real sense of relief comes over them.  I am proud to be affiliated with LLS Patient Services because being there is so important to our patients and families.

Friday, March 1, 2013

Freebie Friday: Therapy Acceleration Program


The Leukemia & Lymphoma Society is very proud of its Therapy Acceleration Program (TAP) and its goal of turning life-saving medical discoveries into cancer drugs at lightning speeds.  Watch this video to learn more about how your fundraising dollars are being used to fast-track cancer drugs.


Thursday, February 7, 2013

Thankful Thursday: Blood Brothers


A little boy battles leukemia with the help of his older brother

Sharply dressed in slacks and a tie, Jude Cobler came home from his fourth day of kindergarten at All Saints Catholic School, on Aug. 19, 2010, with a 105-degree fever.

His mom, Boots, and dad, Keith, had previously noticed lumpy bruises on Jude’s legs and talked to their doctor, who said not to worry unless the bruises popped up above his knees.

Keith called his insurance company’s nurse line. They instructed him to call 911. After the paramedics arrived and examined Jude, they told Boots and Keith to take their 6-year-old to Children’s Medical Center at Legacy in Plano. Soon after their arrival, they found out Jude had leukemia. An ambulance transported him to Children’s Medical Center of Dallas where he spent three days in intensive care and another three on the Center for Cancer and Blood Disorders floor.

“After ICU, Jude went through a lot of blood draws and procedures,” his mom says. “They started chemo right away.”

With an 85 percent survival rate for acute lymphoblastic leukemia, his parents felt optimistic, but were concerned about the lack of cancer medications on the market for children. After a month of chemotherapy, Jude’s leukemia decreased by 75 percent and doctors said he was in partial remission, but wasn’t in the consolidation phase where there is no measurable leukemia in the blood. Boots and Keith continued to spend their nights with Jude in the hospital while their parents took care of his 12-year-old brother, Joshua, at home.

During Jude’s second month of treatment, something drastic happened — his cancer increased tenfold.
“That’s when we started talking about a bone marrow transplant,” Boots says.

Keith worried about his son because Jude is half white, half Filipino. His donor would need to have a similar genetic makeup. So the day the Coblers found out Jude needed a marrow transplant, they picked up Joshua from All Saints to have his blood drawn — and hoped the 25 percent chance he had of being a match would pan out.

“There was definitely a lot of fear of not being a match,” Joshua says. “There was still a lot of grief about Jude being diagnosed and anger about why this was happening.”

Two days later, to everyone’s relief, Joshua turned out to be a positive match for his younger brother.
“Most people you talk to on the street have no idea what a bone marrow transplant is like,” Keith says. “It can be as simple as giving blood, or with younger kids, they put them to sleep and extract the marrow from a larger bone.”

Before Jude could undergo the transplant, which would strip his whole body of his type A blood and replace it with Joshua’s type O blood, he had to undergo a process where all of his live bone marrow was killed off to prepare for the new marrow. It took 10 days of aggressive chemotherapy and five days of total body radiation twice daily to prepare him for the transplant.

“It was very difficult because we had to trust people to take our son away and we couldn’t see him for hours,” Boots says.

That December the two brothers underwent the bone marrow transfer, a life-saving technique that Jude will never forget.

“[Joshua] gave me a second chance at life,” says Jude, now 8. “He’s one of the best family members I can have in my whole life.”

Once Jude received the transplant, Keith says, it was a waiting game for the new bone marrow to take over and his immune system to rejuvenate, a process that took about another month. Around that time, Jude contracted veno-occlusive disease, causing blood to pool in his abdomen, which swelled and became “taut as a drum,” Keith says.

Boots says during those agonizing days, Jude was in his hospital bed screaming the entire night and there wasn’t a thing anyone could do. They couldn’t give the child any more morphine.

Finally the disease corrected itself. Doctors were able to remove drains pumped into his body to remove excess fluid from his body cavity. In early February, Jude was finally stable enough to go home, though his plight was far from over. Jude had to take 20 pills a day while he and family members wore medical masks and obsessively cleaned the house because of his still-susceptible immune system. When Jude started to feel better, he was able to attend school on and off beginning in the fall. And finally, he was able to play outside.
“I always thought there was going to be an end to this,” the now-healthy Jude says. “Even through tough times I thought, ‘I’m going to get through it.’ ”

Joshua, now a Jesuit College Prepatory School of Dallas student, was nominated for The Leukemia & Lymphoma Society’s Spirit of Tom Landry Award for his articles, advocacy and the newspaper he launched while Jude was hospitalized called The Sibling Times. He’ll receive the award at the society’s Saint Valentine’s Day luncheon Feb. 12 at the Meyerson Symphony Center.

As for Joshua’s younger brother and transplant recipient, after two years of medicine, painfully sleepless nights, a family hidden behind medical masks and $2 million of medical bills, Jude is leukemia free. The experience gave him an idea about what he wants to be when he grows up.

“I want to be a pediatric oncologist so I can save lives,” Jude proudly says.

Read original article from Advocate here

Monday, February 4, 2013

Mission Monday: The Inspiration Behind Bennett's Buddies

Bennett Williams looks like a normal, healthy and cute little boy, with two loving parents and two older sisters. When his parents, Kirsa and Keith, took him to his one-year doctor’s appointment, he passed with flying colors. But, one month later, Kirsa noticed red spots on his body. They took him to the doctor the next day, and their pediatrician told them to get him to Children's Medical Center of Dallas right away. There, the doctors confirmed their pediatrician’s concern: Bennett had leukemia.

Now two, Bennett has faced intense treatment, including a regular routine of chemotherapy, 16 blood transfusions, as well as numerous spinal taps and bone marrow tests.

Since his diagnosis, the Williams family has made a big difference for other children with leukemia through their dedication to raising money for non-profits such as The Leukemia & Lymphoma Society —and they have improved their health in the process.

One day Kirsa got a flyer in the mail with a purple jersey on it. It was from the Leukemia & Lymphoma Society, for a marathon called Team in Training (TNT). She decided to go to an organizing meeting at Luke’s Locker, and she asked her friend Amanda to go with her.

Williams said, “I went because I wanted to educate myself with anything to do with leukemia or childhood cancer. I then made the decision to run the marathon, and Amanda agreed to do the fundraising. Even if you never run a mile in your life, they train you on how to do it. Somehow we would find the time to do it.”
Kirsa and Keith ran the marathon in Dallas, and with Amanda’s help, they raised over $60,000.
The trio continued their fundraising as they signed on for the TNT San Diego marathon in June. They recruited three more friends from the Park Cities and raised $30,000. Keith then signed up for a triathlon with TNT and raised another $60,000. In total, they raised $150,000 in one year between the three races.
Williams said, “Keith contacted everyone he knew in his industry across the country. You never know who has been touched by leukemia and what their story is. We would get letters saying things like, ‘my brother died of leukemia, so enclosed is money to support your efforts.’”

When Keith and his friends participated in the triathlon in Washington, D.C., The Leukemia & Lymphoma Society called the family up to the stage, and the Williams' were informed that they had raised enough money to be awarded a research grant in Bennett’s name.

After the ceremony, a woman from the crowd sought them out. Williams said, “The woman asked if Bennett had a port. When I told her yes, her eyes teared up. The woman then said, "‘Ten years ago I did my first team in training, and all the money we raised went to develop an infant port. And here he is in front of me, and he has the port from the money that we raised.’” The Williams then realized what a huge impact their grant could make, and they decided the money should go to research childhood leukemia. “We raise this money, and it makes a difference if even one child survives,” Williams said.

Read the original Bubble Life article here

Friday, February 1, 2013

Freebie Friday: Meet Kim Brown


"You have cancer." Three words I can’t imagine hearing from my doctor. What would I do? What would I tell my kids? Where would I go?

In 2006, my husband and I moved our family from the Midwest to Texas. I started a "job" at The Leukemia & Lymphoma Society (LLS) as the North Texas Chapter’s Patient Services Manager. We moved here to be close to my husband’s family – an amazing group to whom family means everything. His grandfather – "Papa" – had chronic lymphocytic leukemia and had been living with it for years. He was the foundation of that family – hard worker, quiet, but with a quick wit and avid Ranger’s fan. I thought he was the first person I knew who had a blood cancer. Little did I know, how many people in my life had been touched by a blood cancer. Amazing what your eyes are opened to once you look around and listen. My childhood swimming coach – multiple myeloma. A high school diving teammate – Hodgkin Lymphoma.

Other cancers too had hit our family – "Nana" fought breast cancer and WON! Uncle Steve fought pancreatic cancer and lost. My mother-in-law beat cervical cancer and melanoma. Papa’s years of cancer, treatments and side effects finally were too much and in 2008, he died. Cancer seemed to follow this family.
Late in the summer of 2007, this family’s core was rocked. "You have cancer." Those words once again hit this family. This time, my father-in-law. Lung cancer. He had surgery immediately and began chemotherapy. The chemo did not set well with him – he had all the possible side effects. He did well for about one year and then he relapsed. It hit with a vengeance. He fought. His family fought. Cancer won. On July 4, 2009, at the young age of 54, we said good-bye to an amazing father, son, brother and grandfather. Why?

Then, fall 2010, once again... "You have cancer." This time, uncle Kent. Lung cancer again. His battle was hard, but short. Cancer took him, too young at the age of 54, around Thanksgiving.

Too many losses for one family. I hate cancer. Cancer SUCKS!

My "job" at The Leukemia & Lymphoma Society has introduced me to some of the most amazing people you will EVER meet. Full of spirit, fight and courage. Facing unbearable obstacles, they take on cancer. They fight. Many win. Too many (any, is too many for me) do not. Many care for those who are fighting. Wives, sisters, brothers, parents, doctors and nurses. All fighting for one thing – to BEAT CANCER! Cancer changes them…it changed me.

I have the pleasure of talking to these people. I say I have a "job" at LLS, but it is much more. It is with me at all times. It is who I am. And I am proud of that person. A fighter. An advocate. A helper. Helping them find support, providing education, linking them to resources and listening. I am inspired by all those I have met. LLS has provided me with another family. One made up of amazing fighters – staff, parents, patients, families, nurses, social workers, pharmaceutical reps and doctors. We all have something in common…cancer has taken something from us and we want to stop it. We all have our place in this war. Do you? Can you join us? Do you want to beat cancer, too?

"You have cancer." Don’t be afraid of those 3 words. My "job" is to make sure you do not feel alone and to let you know someone is there fighting with you. I have the privilege of helping and comforting those with cancer today. I have the honor of fighting for cures that will change all cancers for the future.
LLS is leading the way in research, patients services and public policy. You would be amazed at what has been accomplished. But we are not done yet. There is a place here for you…and you can make a difference. Join us.

To learn more about what LLS is doing to change the world of cancer and to learn more about your disease and survivorship issues, join me on Saturday, February 28, 2013 at UTSW for the 8th annual Lone Star Blood Cancer Conference. This conference offers a full day of education, support and inspiration. www.lls.org/ntx/lonestar

Fun facts:
I live in Prosper, TX with my husband, two sons and two dogs. I love the mountains, horseback riding, being outdoors with my family and the Texas Rangers!

Thursday, January 3, 2013

Thankful Thursday: Advocacy

Take action now.
Make your voice count.
You are cordially invited to join The Leukemia & Lymphoma Society (LLS) for a discussion about the role that grassroots advocates play in finding a cure for blood cancers.  Together, our voices have a powerful impact on legislators that will result in much needed support for blood cancer research and patient care.

SAVE THE DATE:Tuesday, January 15, 2013

2:30-4:30p
Presentations & Town Hall Discussion
Baylor University Medical Center
Charles A. Sammons Cancer Center
10th Floor Conference Center
3410 Worth St.  Dallas, TX 75246
Parking in Garage 4 (off Worth St.)
Vouchers are available for attendees

Feating presentations by:
Scott Riccio, Vice President, LLS Advocacy and External Affairs
Brian Rosen, Vice President, LLS Government Affairs
Jon Hoffman, Manager, LLS Advoacy and Volunteer Engagement

Please RSVP by Tuesday, January 8, 2013 to Kim.Brown@lls.org or (972) 996-5905

What does it mean to be an advocate?
  • Make your voice heard
  • Communicate with legislators about issues that affect blood cancer patients, family members or caregivers
  • Represent blood cancer patients among local healthcare coalitions

Thursday, December 20, 2012

Thankful Thursday: Winning Awards

Stanford University Awards The Leukemia &
Lymphoma Society the "Sprit of Hope" Award


Stanford University School of Medicine has presented John Walter, CEO of The Leukemia & Lymphoma Society (LLS), with the 2012 Spirit of Hope Award for Outstanding Health Care Organization in recognition of LLS’s 35 years of funding support to Stanford’s researchers.

In the last 15 years alone, LLS has awarded more than $27 million in research grants to Stanford University investigators, who are at the forefront of discovering innovative diagnostics and treatments.

The event was hosted by one of Stanford’s esteemed researchers, Beverly Mitchell, MD, director of Stanford Cancer Institute, who has made many significant contributions to LLS over the years. Dr. Mitchell currently leads an LLS Specialized Center of Research (SCOR), a program that funds teams of researchers representing different disciplines who are engaged in collaborative efforts to discover new approaches to treat patients with hematological malignancies.

Among their many cutting-edge projects, the team is testing a new targeted drug for patients with myelodysplastic syndromes (MDS), with a long-term goal of preventing the disease from advancing to acute myelogenous leukemia (AML). This same drug is being advanced in clinical trials by Onconova Therapeutics Inc., a partner in LLS’s Therapy Acceleration Program, a strategic initiative to form corporate partnerships to advance sponsored research in the clinic.

Dr. Mitchell also served as a as a past chair of LLS’s Medical and Scientific Advisory Committee and was a member of its national Board of Directors.

“It is truly a great honor for LLS to be recognized by a world-class research institution such as Stanford,” Walter said. “For more than 35 years we have shared a commitment to advancing outstanding cancer research and transforming the most promising discoveries into treatments to help patients live better, longer lives.”

Photo: LLS CEO John Walter Addresses the Audience at Stanford Before Accepting Award as Beverly Mitchell, MD, Stanford, looks on.

Monday, December 17, 2012

Mission Monday: Targeted Therapy Research


TARGETED THERAPY RESEARCH
Discovering the molecular abnormalities that cause particular types of blood cancer has been useful
in diagnosis and risk stratification, and in new “targeted drug” development. LLS-funded
investigators have helped advance molecularly targeted treatments that can selectively kill blood
cancer cells versus normal cells. Many of these new treatments benefit not only blood cancer
patients, but also patients with other diseases. For example:

Gleevec® is FDA-approved for patients of all ages with chronic myeloid leukemia (CML), and
is also approved for patients with one form of acute lymphoid leukemia (ALL), myelodysplastic
syndromes (MDS), myeloproliferative disorders and rare forms of stomach and skin cancers.
Related drugs, Sprycel® and Tasigna®, are approved for patients who do not benefit from
Gleevec. One or more of these drugs are also showing promise for patients with various
lymphomas, acute myeloid leukemia (AML), chronic lymphocytic leukemia (CLL), and other
cancers, including brain, breast, head-and-neck, lung, pancreatic, and prostate cancers, and
patients with other diseases including Alzheimer’s, asthma and pulmonary hypertension.

Rituxan® was the first FDA-approved, anti-cancer antibody drug, developed for patients with
forms of B-cell non-Hodgkin lymphoma (NHL). It is now also approved for CLL patients and as
a “maintenance” therapy for follicular lymphoma patients, and showing promise for patients with
ALL and after stem cell transplantation. In addition, it is approved for treating patients with
severe rheumatoid arthritis and two other types of autoimmune diseases. A related antibody drug,
Arzerra®, is approved for CLL patients and showing wider promise.

Velcade®, Thalidomid® and Revlimid® are FDA-approved for patients with myeloma and are
also helping some patients with Hodgkin lymphoma and NHL.
Krypolis® was recently
approved for myeloma patients for whom at least two prior therapies were insufficient. One or
more of these drugs are now being tested for patients with T-cell and B-cell forms of lymphoma,
acute leukemias, as well as AIDS-related Kaposi sarcoma and brain, breast, colorectal, head-andneck,
kidney, liver, lung, ovarian and prostate cancers, and Alzheimer’s disease.

Istodax®, Zolinza®, Dacogen® and Vidaza® target small chemical, “epigenetic” changes. The
first two drugs are approved for patients with peripheral T-cell lymphomas; the latter drugs are
approved for MDS patients. One or more of these drugs are being tested for patients with ALL,
AML, CML, CLL, myeloma and forms of NHL, after stem cell transplantation, and for patients
with breast, brain, kidney, colorectal, head-and-neck, lung, stomach, prostate and ovarian cancers, melanomas well as sickle cell disease and persistent HIV infections.