Finish YOUR Race: An Interview With the Author

Don Armstrong, a leukemia survivor and ardent volunteer and advocate for The Leukemia & Lymphoma Society (LLS), released his book Finish YOUR Race earlier today.  (Purchase it now on Amazon.)  It chronicles his journey from the moment he heard "you have cancer" to now.  His stories will inspire people with strategies and lessons he learned to accomplish their goals.  

Below Don answers a couple questions about the book and what compelled him to write it.

Why did you feel the desire to write this book?

I faced an illness eleven years ago that could have taken my life. My cancer journey was filled with uncertainty and challenges that tested me on a daily basis.  I learned a lot about myself and life on this journey.  I wrote Finish YOUR Race to share the extraordinary lessons and strategies I learned during my journey.  I won’t want anyone to experience what I did with cancer, however, I would like everyone to know what I learned along the way.

What about this book is different than other motivational books?

This is a terrific question with a fairly simple answer.  I lived every minute of every hour of every day of this journey. My book is about real life experiences of this journey and the impact it had on me.  This journey changed almost everything about me – priorities, goals, directions and motivations.  I share these revelations in hopes that they will have a positive impact on the reader.

           

What do you hope people will take away from this book?

Setback can affect all of our lives to varying degrees. It is my hope that the reader will be equipped with strategies to empower their life and overcome any setback.  In the final analysis it’s not the setback but the way it’s handled that determines who we are in this world. Ultimately, it’s never too late to make a difference in yourself and others.  With courage, focus, and a positive spirit, you can discover, or rediscover, what living your best life means to you.

How did LLS play a role in your story?

The advancements made by LLS, since it was founded in 1949, made it possible for me to be alive today.  All of the dollars raised since 1949 led to the advancements such as chemotherapy, stem cell transplantation and so much more.  I don’t know that I would be here today if it wasn’t for the advancements and successes of LLS.

Don is donating 10% of his book sales TODAY to LLS.  Pick up your copy online by clicking here.

Patient Access Manager: World Cancer Day

Today is World Cancer Day, a day when humanity rallies together across borders and oceans to unite in the fight against cancer.  The Leukemia & Lymphoma Society (LLS) is leading the way.  For us, World Cancer Day is a day of action. We act because adequate funding for research CAN put cures within reach. 

The Cancer Moonshot Initiative officially just kicked off on Monday! This historic project aims to end these diseases once and for all.  Just as Americans came together to put astronauts on the moon, we must be bold to push beyond the boundaries that have stood in the way of cures.

If you want to be part of this effort, the first step is telling your story – to make sure our leaders in Washington understand the many burdens of cancer: emotional, financial, spiritual, and physical. Join the moonshotmission to find cancer cures! Tell Washington how cancer has touched your life and your loved ones.  By taking action today, you're standing with the millions of patients, families, and researchers in the search for cures and treatments to alleviate the suffering cancer brings upon us. Cancer is personal, and with your help, we can advocate for the changes that will improve the lives of the people we hold most dear.

LLS is pioneering cutting-edge precision therapies.  The science of immunotherapies presents a paradigm shift that has forever changed the landscape of cancer care.  Using a patient’s own immune system to kill cancer, providers can work with a patient’s genetics and lifestyle to develop a personalized therapeutic plan.  You can learn more about how LLS identifies and supports promising researchers here:https://www.youtube.com/watch?v=iU8iruhryTs

Today, we celebrate the researchers, providers, survivors, caregivers, and supporters in our international oncology community.  We here at LLS recognize that there is a shared experience and sense of solidarity among everyone affected by cancer.  On September 9 and 10^th, LLS North Texas will be hosting a Cancer Expo to highlight health, wellness, and support resources for everyone in our community.  Please save the date and plan to attend! More information on vendors and schedule coming soon! 

Your friend,

Seetha

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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:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: IWMF Educational Forum

May is an important month of firsts for me.  My first Mother’s Day.  My daughter’s first birthday.  And, my first International Waldenstrom's Macroglobulinemia Foundation (IWMF) Educational Forum!  Every year IWMF brings together the patient, caregiver, and support communities to learn about Waldenstrom’s.  Presentations are given by thought leaders in research and clinical practice, but aimed at a lay audience.  We were lucky enough to host this year’s Forum right here in Grapevine!

The day before the main Forum started, I attended a luncheon with support group leaders.  As a Patient Access Manager, I support the medical, nonprofit, and survivor/caregiver communities.  It was so interesting to talk to these leaders and learn from their experience.  A good majority of those who have now assumed leadership positions in their community actually started in groups as patients or caregivers themselves.  I love stories where people take challenging experiences and channel them into positive change for others.  This group did not disappoint!  They brought tears to my eyes and inspiration to my heart. 

The next three days were the sessions.  The speakers were clearly vetted well, because the caliber of these talks really blew me away.  Seriously-check out this lineup: 2015 Ed Forum Agenda!   I am going to tell you about my favorite two: Dr. Larry Anderson and Dr. Lee Greenberger.  Hey, I never said I wasn’t biased!  I made me proud to see these two LLS rock stars represent us so well. 

LLS sponsored Dr. Anderson’s session: I Need Treatment – First Line Treatments & Side Effects on Friday. Dr. Anderson reviewed diagnosis, first-line treatment options, the benefits of each option, and potential side-effects to consider before deciding on which option is right for you. His case study method highlighted various presentations of the disease and how treatment options vary based on the diagnostic profile. The interactive session let the audience apply the information themselves and showed me the importance of empowering patients.  These types of educational sessions go a long way in promoting patient/caregiver engagement and encouraging them to be their own advocates throughout treatment. 

When he is not educating the masses, seeing patients, or juggling the 13 clinical trials he is involved in, Dr. Anderson also finds time to be an LLS advocate.  This year, he is a Man of the Year candidate.  A special thanks to Dr. Anderson for the many ways he supports our North Texas community!

On Sunday, Dr. Lee Greenberger talked about The Strategic Research Roadmap for WM.  As our missions are so closely intertwined, LLS and IWMF have a long and rich partnership.  This talk was no exception, and served as a precursor to the joint Road Map session for WM that LLS and IWMF will be holding in New York City on May 16^th and 17^th.  I will provide a more detailed review of Dr. Greenberger’s presentation and some takeaways from this planning session in my next blog post.  Stay tuned. . . more to come! 

Your friend,

Seetha 

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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:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: Shaping Public Policy

Staff from several Texas chapters of The Leukemia & Lymphoma Society
meeting with Senator Ted Cruz during the 2014 Mission Days trip to Washington DC.

I wanted to work for The Leukemia & Lymphoma Society (LLS) because the mission means so much to me: cure blood cancers and improve quality of life for those affected by them.  Just last year, LLS invested $79.8 million in research to find a cure. My world focuses primarily on the second half of our mission. I work every day with healthcare providers, community partners, patients, and their families to improve the quality of those lives touched by blood cancer.  However, what you may not know is that my role falls under the office of public policy.  Advocacy and the political landscape is a critical part of ensuring a good quality of life for patients during and after their treatment.  While every person and story are unique, there are systemic issues that affect all of them. 

The LLS Office of Public Policy works to create a system that supports and guides people through their cancer journeys.  Our work in this area includes ensuring patients have an adequate network of providers and services, protecting patients from high out-of-pocket costs, preserving Medicare Part D provisions for prescription drug coverage, working with the FDA and other key stakeholders to ensure timely access to life-saving drugs, and ensuring that the voice of blood cancer patients is well-represented throughout the legislative process. 

LLS recently testified before a committee in the US House of Representatives on the importance of providing meaningful insurance coverage to people with pre-existing conditions.  Other accomplishments include eliminating Oregon’s two year waiting period for transplants for previously uninsured patients in the state health exchange, and leading coalitions in six states to pass oral parity bills that ensure patients taking oral medicines aren’t required to pay more than those getting physician-administered therapies. 

If removing barriers to equitable access and creating a strong system of support for blood cancer patients matters to you, then you should join our advocacy network.  So many great accomplishments have been made one email or phone call at a time.  Letting your representatives know that you support the rights of blood cancer patients has never been easier.  Sign up for our advocacy network here today: http://advocacy.lls.org/signup_page/signup  To see more ways LLS is taking action today check out our legislative action center: http://advocacy.lls.org/p/dia/action/public/

Together we can, are, and will continue to, make a difference. 

Your advocate,

Seetha 

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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:

Seetha.Modi@lls.org

(972) 996-5905

LLS Participating in a Congressional Roundtable

The Leukemia & Lymphoma Society (LLS)  has worked tirelessly to become a leader in the cancer field when it comes to fighting for better treatment and improved access for patients.  This relentless pursuit has been noticed by the lawmakers on Capital Hill and now they are asking to hear from LLS about the future of cancer treatment.

Tomorrow (Wednesday, July 23, 2014) LLS interim CEO and President Dr. Lou DeGennaro will participate in a roundtable hosted by the House Energy and Commerce Committee.  The roundtable will focus on personalized medicine and how it can help advance cures and treatments in the 21st Century. 

You can watch and listen to the discussion tomorrow from 10a.m. - 12p.m. EST.  It will be streamed live here.

Susan Allen: Reflecting on Day 3 of the LLS Symposium in Washington DC

Hello North Texas LLS,

Wednesday was the most important day of our trip. We were going to Capital Hill to make a difference for cancer patients. We as a group, had 352 visit’s scheduled to both senators and representatives in Congress. Each visit was important because we would  share information about two bills that impact cancer patients and their access to life-saving medication.

To start our day off we had the pleasure of hearing another amazing survivor story and how she was using her story to raise awareness about blood cancers.  Her name is Sadie Floyd and she battled ALL as a child and then went on to become a race car driver. She uses her status as a successful race car driver to display an LLS sticker on her car.  It became a platform for her to tell her story about the moment she heard the words, "you have cancer."

Congresswoman Anne Eshoo then spoke to us about the power of advocacy and how what we were about to do was important. Each year 25,000 bills are introduced into Congress and only 300 of them make it to become laws.  It drove home the fact that we needed lawmakers to hear our voices. We had been carefully trained by the LLS Office of Public Policy on exactly how the meeting structure would be and what an important role we each played at the meeting. I had the job of being both a patient and as an LLS Patient Access Manager.  I used my story and that of those who I've met in my position with LLS to talk about what resources and information patients need.  The other members of the group had the responsibility of sharing the data and importance of what our request was at each meeting. We needed these meetings to result in awareness and support of the bills that would directly effect our patients. 

We met with a lot of political staff member’s if the actual representative wasn’t available. These staff members were young people whose job it was to carry our message to their boss and it was refreshing to see them vitally interested and asking questions. We did have the pleasure of meeting with the oldest member of Congress, Ralph Hall, who happens to be my representative. He invited  all five of us into his office to sit on his blue leather furniture and make ourselves at home. He wanted to know what we needed from him and listened intently to Kim Brown and Tim Durst share our requests and without much hesitation he signed on to Co-Sponsor the bill. Thank you Ralph Hall, I always knew you were a good guy!!!!

The day started at “The Hill” with all 600 LLS advocates on the steps of the Capital taking a picture with our hands up stating “Cancer Ends With Me” and we ended with tired feet, from all the walking and a great sense of accomplishment. Let it be said that when LLS speaks, Congress listens.

Just like the last three days where we had the pleasure of hearing special survival stories, our last night there when we met at Union Station to celebrate the day, was no different. Chip Esten who stars in the TV series Nashville mingled with us, took pictures with us. He told us about his daughter Addie and how she had battled ALL as a two year old and LLS had been there for them. He and his family live in Nashville and are very connected to the Nashville Chapter.

The last three days have been an LLS whirlwind but an amazing look into the depths of LLS and what our mission “Finding a cure for Blood Cancers and improving the lives of Patients and their Families” really means.  LLS leaves no stone unturned from looking for the cures in laboratories to improving lives on the Hill and all the people working together in middle.

I want to savor the last three days and I want some of you to have the opportunity to experience and LLS Mission Day’s so you can tell your story. LLS takes paid employees and so many volunteers to make it all work. Consider using your voice, talent and skill to partner with us going forward, it takes us ALL to make it work.

Thank you for taking this trip with me and now I return to my office and welcome hearing from you all.

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Reflecting on Day 2 of the LLS Symposium in Washington DC

Good Morning North Texas LLS,

Wow, do I wish you could all be here to hear the information first hand but I am honored I get to bring it back to North Texas.  Day two in Washington DC started with Volunteer Leadership Training and, of course, our Texas volunteers were at the front table anxious to hear the latest strategies for recruitment and fundraising. It was like a think tank of all the best practices from our major campaigns that are currently used across the nation that volunteers could take back to their chapters. Without our major campaigns and their fundraising ability, our progress and future of LLS and finding a CURE would look much different.  Thank you to all of our North Texas volunteers and all you do to make LLS such a success in so many ways. Your dedication is admired and appreciated.

The lunch hour was spent listening to the story of a little boy Rhett Krawitt who was diagnosed with leukemia at age 2 and at age 6 stood on the stage yesterday and declared "Cancer Ends with Me." His father shared the story of their journey and the ups and downs of his battle.  The family relied on the statement "Gone with the Cancer", which was an obvious theme from the movie "Gone with the Wind."  (It's a family favorite as you can tell by the name Rhett.)  As his father wrapped up his portion of the program, Rhett's sister came to the stage and very proudly introduced her little brother to the stage.  Rhett, with true pride, stood before 600 of us in the audience and told us about his job of getting through the treatment and getting "the bad guys" out and finished his story by boldly stating, "Cancer, I give a DAMN!"  The audience jumped to its feet and gave him a standing ovation.

The day continued with House Majority Speaker Eric Cantor whose message was, "We cannot just be a country of good treatment, we have to be a country of CURES."  Wow, to see such an important person in our country's government speak so strongly in relation to the LLS mission was inspiring.  We spent the afternoon in preparation for our day tomorrow on the Hill.  We learned about telling our story.  As I sat at my table and listened to those around me tell theirs, I was just amazed.  There was a man who had CLL and he would not have been alive today unless he had been accepted into a three-person research study.  He was so grateful to be alive, to have his disease cured and to be in DC to tell his story to those who can make a difference for other cancer patients.

We are taking our crusade to Capital Hill and we are ready to storm the Hill!

Have a great day North Texas, I will be in touch soon.

You can read Susan's recap of the first day in DC here.

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Reflecting on Day 1 of the LLS Symposium in Washington DC

May 5, 2014

Hello LLS North Texas,

I set out for Washington DC on Monday May 5th, full of anticipation. On what is my 22 year anniversary of being diagnosed with Hodgkin's Lymphoma Stage 2B it is such an honor and privilege to be attending the "Leading Way to a World Without Blood Cancers.'  It is a three day event that will bring together researchers and scientist who are forging ahead to find a cure, volunteers leaders and passionate advocates all under one roof. We will focus on where we are today and where we are headed in the future to have the most impact on the LLS Mission, "A World Without Blood Cancer."

Monday afternoon we listened to a ten person Research Panel that included two transplant specialist, several research scientists, sweet Emily Whiltehead who is featured in our Fighting Fire with Fire video (who turned 11 on May 2nd), the parents of a child who lost the battle but they remain passionate about LLS, a pediatric and Adult Hematologist/Oncologist. Although all of the panelist are highly educated and shared their vast knowledge with us they also spoke from the heart about their passion to find a cure.

A theme that I heard from the panel is that they understand that treatment for blood cancer is rigorous and a challenge to the body due to the toxicity of the drugs and treatments. In researching and developing new options for patients their work is spent on being "specific targeting" of cancer cells through Genomic testing and paradigm shifting technologies.  That will help doctors focus their work down to the cell and gene where the cancer originated. Dr. Bradner stated, "It is a very special time in biomedical research and it should receive our full attention." At that time that Dr. Lou Degennaro, the acting LLS CEO and Chief Mission Officer, asked the panel, "How can LLS help, where should we focus our efforts to make the most impact?" The panelist were clear in the fact that their goal was a CURE and that means two things: 1. Cancer free/no medication,  and 2. Long term medication induced remission, citing CML and the fact that is is a chronic manageable disease using Gleevac. The main theme - when it comes to funding we CANNOT take our foot off the gas peddle, we must double down and go for it. It is Time to Complete our Mission and "Someday is today."

Our day concluded with two moving survivor stories that had everyone in the audience on their feet knowing that we are moving ahead and WE WILL get there. As far as my survivor story, wow, what a ride!  Going from 22 years ago with four little boys, the youngest 17 days old, a new diagnosis and a treatment protocol to an amazing "Survivorship Journey" and now  working for LLS. Amazing if I must say so myself.

More tomorrow on "Leading the Way to a World without Blood Cancer."

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan and LLS Services: Advocacy

The Leukemia & Lymphoma Society (LLS) provides a wide range of offerings and services to blood cancer patients, their family members, caregivers and survivors.  In an effort to better educate the community about LLS, we are excited to launch a monthly informational series that will highlight our services and the ways North Texans can best utilize them.

This month we introduce the Advocacy branch of The Leukemia & Lymphoma Society and why it is so important for you to use your voice on behalf of blood cancer patients.

As the national healthcare landscape continues to change, so do the needs of blood cancer patients and their families.  The Leukemia & Lymphoma Society (LLS) is responding by increasing its presence not only on Capitol Hill but in each of the 50 states to fight for the best care and treatment options for blood cancer patients.


I recently met a gentleman named Luke Webb whose personal blood cancer battle is the reason why we are fighting so hard to change current laws.  Read as he talks about having the right treatment to his diagnosis but no way to pay for it.

"I was diagnosed with CML in September 2008 at the age of 28.  I had been married less than a year before and was shocked with the diagnosis.  I had been experiencing abdominal pain for a few days but because I only had catastrophic insurance that covers surgery and hospital stays, I was avoiding going to the emergency room.  After the third day I decided I didn't care what the cost was and went to the local ER.  After waiting for a few hours for test results, a physician's assistant came into the room, left the door open, and said 'you have cancer.'  I was floored.  I couldn't believe that at age 28 that I could have cancer.  I was admitted to the hospital where I was observed and given an oral medication called Gleevec.

After two days, I was released with a prescription for Gleevec and a follow-up appointment for two weeks.  I tried to get the prescription filled but told it was $4,800.  I thought something was wrong with the computer system at the pharmacy because I had never heard of any type of pill costing so much money.  It turns out that because I did not have prescription coverage and Gleevec is considered an oral chemotherapy, as opposed to an IV chemotherapy, that I would have to pay the full price of the drug every month.  This was the second time in two days that I was shocked.  These decisions are tough because I needed the drugs to get better but wasn't sure how I was going to pay.  Luckily, I had a family member lovingly agree to pay for my first month's supply.

During this time, someone from LLS called me to reach out and offer support in this time of need.  They discussed new treatments, offered support groups and even arranged a phone call with a CML survivor who was my age and in remission.  It was exactly what I needed to get some direction and put my life back on track.

It can be a tough and lonely road but knowing that my family, friends and LLS were there for me made all the difference in my recovery.  Without the help and knowledge of the LLS advocacy workers, I don't know how I would have ever been able to get the drugs I needed and to live a normal and healthy life."

Sadly, Luke's story is playing out in communities across the country.  People are being forced to decide between paying their mortgage and paying for the drugs they so desperately need to stay alive.  This is not ok.  Help us, help Luke and the thousands of other Americans in his shoes.  Register to become an advocate today!

During this first month between doctors visits and blood tests I was on the phone with the insurance company 20-30 hours a week, working to get them to cover not only my hospital stay (which was supposed to be covered) but also to get help with the cost of Gleevec.  There is no way I, or anyone really, can afford to pay over $57,000 per year just to stay alive.  

Eventually my blood counts stabilized and I started to feel better.  After going through all of the options, the only choice I had was to qualify for assistance through the drug manufacturer.  This meant making a very small amount of money per year in order to get the drugs for free.  It was a tough decision at the time but in the end it was necessary to survive.

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Save the Date: Advocating for Blood Cancer Patients

The Leukemia & Lymphoma Society (LLS) will host a three-day conference in Washington, DC, May 5-7, 2014, focusing on advances in research, lifesaving therapies, advocacy, volunteer leadership and public engagement. This is an important opportunity for our organization to showcase our commitment to finding cures and ensuring access to treatments for all blood cancer patients, through three major pillars: leadership training, advocacy and research. 

Our Research Symposium, Bridging the Gap from Bench to Bedside: The Road to Cures, will be held on Monday, May 5.

Our Volunteer Leadership Day, Tuesday, May 6, Cancer Ends With Me, will feature inspirational special guests, including survivors and families, and LLS staff, in interactive sessions to share learnings and best practices to enhance fundraising success.

On Advocacy Day, May 7, Leading the Charge for Cures and Access, volunteer advocates meet with members of Congress and their staff to engage them in LLS’s policy agenda.

Interested in participaiting but can't make the trip to Washington DC? We will have opportunities for your to steam the sessions live.  Information on how to follow along remotely will be published closer to the conference.

Thankful Thursday: LLS Mission Days 2013

Texas Tuesday Coffee

This year more than 240 LLS staff and volunteers made their voices heard on capital hill in Washington DC on Tuesday, June 4, 2013 at the annual Leukemia & Lymphoma Society (LLS) Mission Days. With the amazing leadership of a new LLS public policy and advocacy team, LLS brought issues important to blood cancers patients to their legislatures. The goal was simple: LLS is focused on finding cures and ensuring access to quality, affordable, coordinated care. LLS has invested almost a billion dollars in research since its beginning and the recent advances in research and cancer treatment means we are living in very exciting times. However, these new and future treatments must be accessible to patients or the all the hard work will have been done in vain. That is where the work of public policy and advocacy comes in.

Specifically this year, LLS focused on making self-administered cancer treatments more accessible to patients through creating drug parity (HR 1801) and/or eliminating specialty tiers for prescriptions (HR460). What this means for patients is if their treatment is oral or self-injectable, it should be paid at the same rate as they would pay for an infusion in the clinic (parity) or they should pay the max prescription tier level of a brand name prescription, not at a specialty tier level.

How does the Cancer Drug Coverage Parity Act address the issue?

HR 1801 requires that health insurance carriers cover the cost of cancer treatments equally.  There cannot be higher costs (co-payments, co-insurances, deductibles) for prescribed medications than for therapies administered by a doctor.

How does the Patients Access to Treatments Act address the issue?

HR 460 would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs.

For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50% for specialty drugs, HR 460 would require the insurer to charge no more than $30 for specialty drugs.

For example, Gleevec, an oral medication for CML that has changed the outcomes of this disease, is approximately $7,000 a month. 　The newly proposed legislation would protect these patients from having to pay co-insurance amounts of 30-50%, or more, which can make the drug inaccessible for many.

North Texas was proudly represented by North Texas Excutive Director Patricia Thomson of Congressman Joe Barton’s District; North Texas Patient Services Manager Kim Brown of Congressman Michael Burgess’ District; CML suvivor Britt Hemsell of Congressman Sam Johnson’s District and AML survivor Don Armstrong of Congresswoman Kay Granger’s District. This team made visits to each representative’s office. The goal was to help the representatives understand the importance of these issues and to become co-sponsors of these acts, or support them when it comes time to a vote. In addition, the North Texas team was joined by the South/Central and Gulf Coast teams in making visits to the Texas Senator’s offices. We got to meet each of the Senators, Ted Cruz and John Cornin, at the weekly Texas Tuesday coffee.

Mission Days is always inspiring and exciting. This year’s left the team even more energized in the work LLS is doing and provides hope for bridging the wonderful research that LLS is investing in with making these new treatments accessible for blood cancer patients.

You can make your voice heard by becoming an advocate for LLS. Go to

www.lls.org/advocacy

Mission Monday: First Connection Volunteer

Bill Bock with Deputy Executive Director Stacey Russell (left)
and Executive Director Patricia Thomson (right) at the 2013
Volunteer Appreciation Event.

I will always remember the moment when the doctor said "I’m afraid you have AML and it is a very serious form of leukemia". He explained that this disease was highly complex and that his hospital did not even take AML patients. In a blur, we were shuffled off to a larger facility where a new oncologist spent a goodly amount of time with treatment options and ended by saying I needed to be admitted immediately. We left with a whirlwind of terms like chemically induced remission, stem cell transplant, graft vs. host disease and many other barely understood concepts. The whole ordeal was frightening and I wept when I told my children.

The hospital stay was long and emotionally exhausting for my family. In 2005 patients were confined to one floor in an effort to avoid outside infections. I recall praying for simple things like sunshine and a light breeze on my face as I watched runners twelve stories below and wishing I could join them. Upon remission, my transplant nurse said she had found a number of potential donors and that two were considered perfect matches. Furthermore, each agreed to donate. After undergoing a second high level chemotherapy round to prepare my body for the transplant, the actual transplant process was almost anticlimactic.

The roller coaster of emotions eventually came to an end and I was released to begin the healing process.

In subsequent doctor visits I learned of The Leukemia Lymphoma Society (LLS)and their First Connection program and it brought back all those feelings of fear and despair. My wife and I would have loved to speak to a survivor who had experienced all this. I told myself I would get involved so that someday a man just like me would learn that this is not a death sentence and that there can be a positive outcome.

Five years and three more grandchildren later, I was pronounced cured.

Since then I have signed on as a First Connection volunteer for the North Texas Chapter and have made countless calls to newly diagnosed patients of all blood cancers. While attempting to alleviate their fears, I also make them aware of other LLS services that can help with financial, psychological and legal difficulties.


About the First Connection Program:
The Patti Robinson Kaufmann First Connection Program is a free service of LLS that enables patients and their loved ones to connect with a trained peer volunteer who has gone through a similar experience.  The program makes an average of 6,000 first connections each year.

LLS First Connection peer volunteers are in a unique position to provide support and community resource information to others facing a similar cancer diagnosis.  Patients and their family members are matched with peer volunteers.  The match is based on diagnosis, age, gender and other factors that might create a mutual understanding and ease of communication between participants and volunteers.

You can learn more here about how to take advantage of the First Connection Program in North Texas as either a volunteer or recipient.

Mission Monday: Mission Day

This year's Federal Mission Day is here, with advocates scheduled to arrive in Washington, D.C. today for training and to take the Capitol by storm on June 4th. This dynamic meeting partners Executive Directors, Patient Services staff, and engaged volunteers with The Leukemia & Lymphoma Society's (LLS) Office of Public Policy, working together to help accelerate new cures and treatments for our patients and ensure they have access to quality, coordinated cancer care. This meeting will bring together the three pillars of the LLS mission: research, patient services, and advocacy, to drive better public policies that will help our patients live better, longer lives.

If you didn't make the trip to Washington, DC this year, you can still help participate in our efforts to educate Congress about the need to find a cure for blood cancers.    Add your name to the Mission Day petition today to let your members of Congress know that blood cancer patients are counting on them to support research and treatment options to help patients live longer, better lives - not someday, but today.

SIGN the Mission Day petition now and send out to your network of family and friends to do the same.

Mother's Day Profile: Renee Cooper

Mother's Day means different things to different people. As a mother it reminds me, of the amazing human beings that have been put in my life. Human beings that I call my children. Their smiles and laughter remind me why I get out of bed in the mornings and why I stay up late at night to make things perfect for them. It is also their smiles and laughter that get me through the hard times. We all have them. The times that we would rather just go back to bed and pull the covers over our heads and stay there until things are better. But that's not reality.

All four of my children are amazing. They are the reason I keep breathing. They amaze me with all their accomplishments. Each child has a different personality and looks at the world in such a different way. They all make me a better person. When you have a child you want to protect them and you'll take out anyone who tries to do otherwise. So, when you hear the words "Your child has cancer", it takes all you have to keep going.

My youngest daughter; Kaitlin, was diagnosed, less than a month after her third birthday. A time that is supposed to be the best time turned into a nightmare. The moment I heard the words Acute Myelogenous Leukemia, my heart sank. That can't be MY DAUGHTER..that's someone else's. But no, it was about my baby girl! With this diagnosis, life became chaos. I had to learn to trust strangers who I had never met. To trust that what they were recommending to do to Kaitlin, what was best, in order to not only fight this horrible diagnosis but to also keep her alive.

I heard survival rates and percentages. I was told what would happen to her. I was told what side effects they thought might happen and what they said there was very little chance of happening. But Kaitlin being the stubborn and complicated little girl she is, she made a liar out of many things I was told. That first time having to let go of her and watching her wheeled into the operating room (which would not be the last). The times of having to watch the nurses; who later would later feel like part of our family, access her port which meant shoving a needle into her chest..now that hurt. All the trips made to the ICU because things were not going as they were planned. And even having to tell my daughter that it was ok to let go. Because that is what needed to be done since doctors said she would not see morning. Yet she did...because of that stubbornness. One thing you learn very early...NOTHING goes as planned. To enjoy every single itty bitty event more than ever because you don't know if that's the last happy moment you will experience with your child.

Spending a year straight in the hospital became second nature.  To be home was weird. Kaitlin went through numerous rounds of chemotherapy and too many blood and platelet transfusions to count. She made friends with other kids on the floor and she also said goodbye to these same friends. She is such a strong little fighter. She never once lost her smile and always told everyone that "It's a happy day because I woke up." She is nothing short of a miracle!! She always wore her dresses and had her headphones hooked to her ipod dancing around-entertaining anyone around. She reminded me it was alright that all her hair was gone because that just meant we saved money on shampoo and she didn't have to worry about brushing tangles out of her hair. What an amazing daughter I have-so brave!!

Someone asked me recently, if I ever wish my child had never been diagnosed, my answer is easy...of course I wish she hadn't. But yet I believe challenges are only given to those who can handle it and I know that even those days that I feel very alone and just tear up knowing my daughter lost her childhood, those are the days I draw on Kaitlin's strength because she is a HERO beyond heroes! I will always cherish each day more and Mother's Day will mean that much more because; unlike too many we know, I still have four amazing children on earth that I can talk to and look at anytime I want.

If you would like to take time to honor a mother, like Renee, in your life please consider making a donation to The Leukemia & Lymphoma Society this Mother's Day.

Make a donation

online and a letter of recognition of your gift will be sent to the mother you are honoring with your donation. You are also welcome to mail in a donation to: LLS, Attn: Mother's Day, 8111 LBJ Fwy., Ste 425, Dallas, TX 75251.

Thank you and Happy Mother's Day from the North Texas Chapter of The Leukemia & Lymphoma Society.

Mother's Day Profile: Kristy Borden

My name is Kristy Borden and I am a mother of three absolutely amazing beautiful children. In 2008 our lives were considered "normal" - busy, self-consumed, and on the fast track. My youngest daughter Kelcey was enjoying her freshman year of high school, cheering for the Valley View Football team when she came home from practice one evening and mentioned that her under arm hurt from cheering and lifting.  I gave her Advil and thought no more of it until about a week later she mentioned it still hurting so I made an appointment to see our family doctor.  Our physician was glad we had came in, thinking it could be a staph infection under her arm. That was not the circumstance and over the weekend she was in more pain and discomfort. We knew it was time to seek more specialized treatment and we were then referred to Cook Children’s in Fort Worth.  After being admitted, doctors began performing tests and trying to diagnose her condition, and after what seemed an eternity the results from a biopsy came back.  We received a diagnosis that we were not in any way prepared for and as a result had changed our family’s focus.

Kelcey was diagnosed with stage 3 Non Hodgkin’s Larger cell Anaplastic Lymphoma Tcell.  That was a lot to process and I had no idea what it was, why it happened to my baby, or what was ahead of her. The worst day of my life.  As parents you never want to see your child in pain far less fighting for their life. I went into research mode.  I needed to know what this was and what to expect, that is when The Leukemia and Lymphoma Society (LLS) became a valuable resource of information.

I am happy to report that today Kelcey is attending her first year of college and has plans to pursue a career in the medical field. She will celebrate her fourth year cancer free this October.

During one of Kelcey’s weekly visits to her oncologist I picked up a brochure for Team In Training (TNT) and held onto it.  I told myself that is something I would like to be involved with someday in the future.  So here I am.  I have now completed several events with TNT and have no plans to stop.  My biggest reason for joining TNT was to raise funds for much needed research and awareness as I am very passionate about the LLS mission and I have had the opportunity to witness the impact that LLS is making in the lives of many.  Kelcey is my hero, my inspiration and motivation to never give up until there is a cure so that someday no mother’s child will have to battle a blood cancer. This is my prayer and I am relentless for a cure!

If you would like to take time to honor a mother, like Kristy, in your life please consider making a donation to The Leukemia & Lymphoma Society this Mother's Day. 

Make a donation online or via mail and a letter of recognition of your gift will be sent to the mother you are honoring with your donation.  You are also welcome to mail in a donation to: LLS, Attn: Mother's Day, 8111 LBJ Fwy., Ste 425, Dallas, TX 75251.

Thank you and Happy Mother's Day from the North Texas Chapter of The Leukemia & Lymphoma Society.

Mission Monday: Why I Train

Not everyone who joins Team In Training (TNT) or raises money for The Leukemia and Lymphoma Society (LLS) has a direct connection to blood cancers.　 Many may not have a direct connection to any cancer and join for the health benefits and good cause. Funds raised for LLS research have gone on to help with treatments and progress towards cures for a countless number of other diseases from breast cancer to Alzheimer's.

Alumnus and Team Captain Kathleen Robinson shares these thoughts on being part of Team In Training:

What TNT means to me? Focused Purpose.　　

I am　here to help find a cure for blood-related cancers and give my time and resources to help others.　I really got involved with TNT partly for selfish reasons and partly to give back.　 My niece, Sarah, was 7 years old when she was diagnosed with Rhabdomyosarcoma, a cancer in the muscles. 　When her parents took her to the doctor, they were told she simply had a cyst just beneath the skin, and that they would remove and she would be good to go. However, when doctors cut the skin, they found something very different.　　It was a year of not knowing if Sarah would make it or not.　When she felt well enough, she participated in several fund raising events with Wipe Out Kids Cancer and Make A Wish Foundation. 　

I looked into getting involved, but those organizations just were not a good fit for me.　 So, one morning while at　a boot camp, our instructor made the comment about a group called Team In Training that was training to hike the Grand Canyon.　 It peaked my interest, so I went home and looked up the group online.　 I signed up that day! 　I am in marketing and felt that, if every person I knew would give $5, I would easily exceed my fund raising goal and be helping the cause, plus get to do something that I would never do on my own.　　Fundraising did not happen quite the way I thought it would, but　I did reach my goal. 　Thankfully, my niece just celebrated her 22nd birthday and was told she is at no greater risk than anyone else to have cancer.　 What a blessing!　 I want the same for every other family.　 I cannot imagine having to bury one of my nieces or nephews let alone a child of my own. This is what keeps me coming back a couple seasons each　year to raise money for The Leukemia & Lymphoma Society through TNT.　　There　are a　two things that motivate me to continue fundraising and training with TNT -- the hope of a cure and a great exercise program for myself.　 Yes, TNT gives me "focused purpose."　

Freebie Friday: Meet Greg Clarkson, President of the North Texas Board of Trustees

Greg and his son, Ryan, volunteering the
morning of the 2013 Big D Climb

Greg Clarkson, President of the North Texas Board of Trustees, shares in his own words why he is involved with The Leukemia & Lymphoma Society.



We are all called to volunteer at some time during our lives. I urge you to answer the calling. It is an opportunity to use your talents and resources in a way that helps your neighbor, your community, or a stranger in need. My calling was to the North Texas Chapter of The Leukemia and Lymphoma Society (LLS). I am finishing my sixth year as a member of the Board of Trustees and serving my final year as President of the Board. As I make the transition from an active Board member to the Advisory Board, I have taken a moment to reflect on how I became involved with the Society and it's mission to cure blood cancer.

I have not personally had the pain of losing a family member to blood cancer or any cancer for that matter. Prior to becoming a Board member, I did not know anyone that had leukemia or lymphoma nor did I even know that these were afflictions of the blood. I didn't spend much time in hospitals or around doctors or sick people. I am in the banking industry and manage a nationwide small business lending unit for BBVA Compass in Dallas Texas. Our bank used LLS' Light the Night function as our annual employee participation event. This gave our employees a chance to raise money for a charitable cause while remembering friends and family members that had been impacted by the disease. We would all gather with other fundraisers during an October evening and literally Light the Night with glowing balloons honoring those who have fought the cancer fight. This is how it started for me.

After meeting the LLS staff at the North Texas Chapter I knew that these were the people that had the energy and the desire to tirelessly fundraise, educate, and work for the cause. After meeting the scientists and doctors, I knew that this was the cutting edge research at the headwaters of all cancer breakthroughs. This is a disease that can attack anybody at anytime. There is no early warning, no lifestyle change, no preventive maintenance. There is only the need for a cure. So, we volunteers reach out to our friends, family, co-workers, customers, and communities, to help us raise funds for research and a cure. We ask for time, we ask for money, we ask for donation items, or we ask for a moment to tell you about someone that has touched our lives. If not by their name, at least by the way we remember the expression on their face as they traveled on their cancer journey.

During my tenure, I have seen things that would make your hair stand up on end and I have seen things that would make your hair fall out. I have seen the hair grow back and the smiles return. I have seen life renewed and living regained. I have seen the dedication and selflessness of healthcare workers, volunteers, fundraisers, researchers, and legislative advocates. I have seen family and friends, young and old, search for the words to answer the question "why me?".  I volunteered to fill a need and that need remains great.

If you feel it is time to volunteer, don't wait any longer. Even if you have not been personally impacted by blood cancer or fear you cannot make a difference, I can assure you that your efforts will be honored. It is the most rewarding thing you will experience. So take the first step and give T

This month The Dallas Morning News ran an article about a breakthrough treatment that cured a particularly nasty form of leukemia in a few patients. The article was a reminder that everyday somebody is being cured of blood cancer. Someday, everybody will be cured of blood cancer. Let's make that someday, today.