The Leukemia & Lymphoma Society - Fighting Blood Cancers

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donations in Patrick Walby's Blog

Posted by Patrickwalby Jul 18, 2008

Thank you all for your donations, It was a great honor to be nominated with Monica as "Man and Woman of the Year". You can donate at the site at www.leukemia-lymphoma.info Leukemia Society

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Tuesday, July 15, President Bush vetoed The Medicare Improvements for Patients and Providers Act of 2008 (H.R. 6331). However, Congress acted quickly to override the veto – the House voted 383-41 and the Senate voted 70-26 – that would have, among other things, cut Medicare reimbursement rates to doctors by nearly 11 percent.

The bill was of particular concern to blood cancer patients as the bill included a provision to extend the “freeze” on the Medicare reimbursement formula for radioimmunotherapies (RITs), Bexxar and Zevalin, which are used to treat non-Hodgkin lymphoma, by 18 months. Without such a freeze, RIT reimbursement rates would be drastically reduced and access to this valuable therapy would be threatened for many lymphoma patients.

Advocates from The Leukemia & Lymphoma Society and other organizations promptly contacted their elected officials and urged them to override the veto. Thank you to all of the advocates that took a moment to ensure that lymphoma patients have access to these potentially life-saving treatments.

Not sure what "RITs" are? Download our PDF on Radioimmunotherapy as a Treatment for Lymphoma or read about it online.

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Team I Do: Put yourself in the shoes of Dianne or Chuck, in Orange County, CA. They met and began dating and fell in love. Shortly after, Dianne was hospitalized and diagnosed with Stage IV Lymphoma. With this terrifying news, Dianne told Chuck that he should run for the door – that her diagnosis wouldn’t be fair or fun for him. Remarkably, Chuck said “Dianne, when God gives you a gift, you don’t give it back.” And from that moment on, the pair knew they would fight tooth and nail to battle cancer and face the world, together. Chuck proposed to Dianne at her hospital bedside.

Three months into a relationship, I can’t imagine that there are too many people who would have faced this threat the way that Chuck did.

After six months of excruciating chemotherapy and treatments, with Chuck by her side, Dianne is now in 100% remission. And the two are due to be married this September. Happily ever after ---

The story could end here, but instead, this astounding couple is selflessly turning their wedding celebration into a $10,000 fundraiser for Light The Night. They are marrying on Friday and inviting their 60 guests to “walk with them after they walk down the aisle” as “Team I Do” on Saturday at The Light The Night Walk.

In addition, Dianne and Chuck are spending some time leading up to the wedding attending and hosting fundraising events – like a “Survivor Strut” Fashion Show. And to top that all off, Dianne has also buddied-up with a Team In Training participant who is now training for a marathon in her honor.

Well, needless to say, this story just touched my heart. Here they are, facing cancer (and kicking it's butt!), marrying the loves of their lives, and, if they didn't have enough on their plates, dedicating their special day to help LLS! This type of generosity and selflessness does not come around often. And I am honored to be a part of an organization with such beautiful supporters.

Do you know a unique fundraising or mission-related story? I’d love to share it. Leave a comment or email me.

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Are you walking in The Light The Night Walk or supporting someone who is walking? Well, now you can add Facebook badges to show your friends! We’ve created some icons that will let people know what’s important to you. And, they’re a cinch to add to your profile.

http://community.lls.org/servlet/JiveServlet/downloadImage/38-1165-1033/ltn_iamwalking.jpg http://community.lls.org/servlet/JiveServlet/downloadImage/38-1165-1038/ltn_sponsor_me.jpg http://community.lls.org/servlet/JiveServlet/downloadImage/38-1165-1035/ltn_url.jpg

How to add a badge to your profile:

  1. First, sign into Facebook.
  2. Then, add the Pins! And Badges Application to your profile.
  3. Next, click the “browse” tab to search for the LLS badges. (HINT: Type “*LLS:*” into the search box to find them quickly.)
  4. Add the badges you like to your profile! That’s it!
And, there’s more than you can do. If you’re already registered for Light The Night, you can link directly to your online fundraising page from your badge! It’s a quick and easy way to encourage your Facebook network to support you.

How to upload a badge:

  1. First, right click and save any of the badges up top.
  2. Next, make sure you’re signed into Facebook and add the Pins! And Badges Application to your profile.
  3. Click on the “upload” tab and upload the badge you just saved.
  4. Name it (ex: Christine’s Light The Night Badge) and enter in the URL of your fundraising page.
  5. Click “Preview my pin” and choose the version that looks the best. And click one the checkbox under “approve.”
  6. Add it to your profile and you’re done!

You can add as many as you’d like and invite your friends to add some too! We’d love to see what you’ve done with these badges, so leave me a comment, join the LLS Facebook Group, or add me as a friend!


UPDATE 7/15/2008: We now have instructions for adding the badges to your Myspace profile. Visit our Myspace page and look in the "Heroes" section for the badges and HTML codes to add them to your page! You can even use that code on your own blog. Good luck and thanks for the support!

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You can keep up with what I'm up to here. Thanks!

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4th of July in Luna Leverett's Blog

Posted by Tortuga26.2 Jul 4, 2008

Up way too early this morning thinking of ways to fundraise the $3000 I have left to raise. I'm hoping to come up with a way to continue to raise funds to support the Leukemia & Lymphoma society and participate in future events. I have an idea, but will need to talk with a few people first before moving forward.

Stay tuned!

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I paid $4.59 for a gallon of gas today. I am starting to wonder if 16-miles is too far to walk to work every day...

As you wind down from another gas-guzzling week of commuting and prepare for next week’s travel-heavy 4th of July holiday weekend - you’ll be happy to know that here at The Leukemia & Lymphoma Society, we’re looking out for you. We’ve launched a new promotion where you can get free gas when you use your Light the Night Walk Web page to raise funds.

Here’s what you do: Register for your walk, if you haven’t already done so. Then, in July and August raise $250 or more online, and you'll receive a free gas card for $15. For every $500 you raise online, you’ll be sent a $50 card.

In addition, our top fundraiser will also win a vacation for four, at one of Marriott Vacation Club's Orlando resorts, including air transportation. See the full details here.

So, before you try to strap your suitcases and kids to your trusty banana-seat bicycle in hopes of saving money, send out some emails to friends and family asking to support your Light the Night Walk – and gas tank!

There’s a wealth of fundraising tactics, available here, which can help you easily reach your goal.

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It's All Good. in Kari May's Blog

Posted by mayk Jun 25, 2008

Hello friends and family. We are excited to announce that Matt has passed the ultimate CLL prognostic indicator test and we will not be heading to Seattle for a stem cell transplant this year!!! WOOOOHOOOO! We are so excited that we can't contain ourselves.

We'll have a party (fundraiser) toward the end of the summer when it gets too hot to not be sitting in a frigid pool. Look for an invitation in the coming weeks!! For now we just want to say thank you for your thoughts, kind words, prayers, crystal rubbing, words of encouragement and just your general sense of "being there" for our family. It's wonderful knowing we don't do anything in this world alone.

Kari

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http://community.lls.org/servlet/JiveServlet/downloadImage/1015/montyarei.jpg

On April 29, the band Monty Are I performed at Davisville Middle School in Rhode Island as a reward to the students for raising $4,665.89 for The Leukemia & Lymphoma Society’s Pennies for Patients program. This was $500 more than what they had raised the previous year, and were motivated to increase their fundraising efforts after hearing a talk given by Joyce Muir, mother to two of the band members, Ryan and Justin.

What Joyce told the school about was Ryan’s fight with acute lymphoblastic leukemia (ALL). After being diagnosed at 16 years of age, he underwent 2 ½ years of treatment. As he reflects on having cancer he says it was the hardest time of his life, yet it hasn’t been until more recently that he has been able to understand what he went through and the impact it has had on his life.

"Some things I wish I had taken more time to understand is that it’s ok to be sad and it’s ok to get angry cause this is an awful experience, but you need to take that energy and then turn it into something positive and don’t be afraid to express it to other people.”

Today Ryan is in remission, and he says that he hasn’t really shared this part of his life with his fans yet. He feels that now is the time to let people know what he has gone through so he can positively impact others going through similar experiences.

Watch Monty Are I's performance at Davisville Middle School on YouTube, and learn more about Monty Are I at their website, www.montyarei.com.

Learn more about Pennies for Patients, as well as other school programs on the School and Youth website.

Learn more about ALL by downloading these free resources (PDF) or ordering them through the Free Materials section of our website:


Can you relate to Ryan’s experience?

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We are excited to announce an incredible new partnership. We all remember Stephanie Edwards for her stand-out performances on Season 6 of American Idol. Since the show ended, she’s been quite busy. And this year, the talented young recording artist has teamed up with The Leukemia & Lymphoma Society for Light the Night. Her beautiful and inspirational song, On Our Way (written by Julie Wilde), is the soundtrack of the 2008 Light the Night Walk nationwide.

Listen to a clip here.

If you like it, send the clip to a friend and purchase the whole album. It’s a deal at $5. And, Stephanie is graciously donating $2 from every purchase to support Light the Night.

So, not only are we fortunate enough to have this motivational song and up-and-coming starlet set the stage for our event, but proceeds from the sale of the album will help support programs, research and patient services in our efforts to fight blood cancers.

What a great way to kick off the Light the Night season! Get those walking shoes out, Light the Night is just around the corner.


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We are pleased to bring you our newest blog, just launched today. This is The Leukemia & Lymphoma Society’s second blog, joining The LLS Blog. The Light The Night Walk Blog will aim to bring you news and stories on our Light The Night Walk program in an informal and spontaneous style. Feel free to let us know how we’re doing by posting a comment on any of our posts or to give us ideas on posts you’d like to see.

What is Light The Night Walk?

http://www.lightthenight.org/atf/cf/%7B3B87B25A-6262-47A7-94E8-0418813FFA02%7D/LTN_DECADE_LOGO.GIF

Celebrating its 10-year anniversary this year, Light The Night Walk is an annual walk event that raises funds for blood cancer cures. The Walk is casual and doesn’t require you to be in shape, so anyone is welcome to join. There are also incentives for different fundraising levels. Learn more about how you can participate in a walk near you.

Who is the National Spokesperson?

http://www.lightthenight.org/atf/cf/%7B3b87b25a-6262-47a7-94e8-0418813ffa02%7D/08_SPOKESPERSON_BARKER.JPG Rob Brown, an actor who plays football legend Ernie Davis in the new film The Express, is Light The Night Walk 's 2008 spokesperson.\ Davis, who was the first African American to win the Heisman Trophy, died of leukemia at the age of 23. Brown says that playing Davis helped him "understand that all blood cancer patients deserve to live better, longer lives."

Watch Brown in our 2008 Public Service Announcement on YouTube\ or Google Video\.

Learn more about Light The Night Walk by visiting www.lightthenight.org\

Have you participated in a Light The Night Walk? Find friends and share your story in The Light The Night Walk Community.\

Do you plan on joining a Walk this year?


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If you’re the type of person that likes to have face-to-face interaction you may enjoy our local Chapter Education Programs. We have several types of local events, but if you or someone you know has been diagnosed with a blood cancer you may appreciate the disease and support information you can gather at our Chapter Education Programs. You can go to our Chapter Education Programs page for details about the following free local programs:

Getting the Best Cancer Care at Any Age
This program is focused on cancer treatment for older adults.

New Directions in Myeloma Therapy
Learn more about the latest medical directions in the treatment of myeloma and drug therapies, then ask questions during the Q&A session.

The Path to Progress: Clinical Trials in Blood Cancers
This program is great for anyone dealing with any of the blood cancers, and who may be interested in learning more about what it means to participate in clinical trials.

Fill out the form at the bottom of the page to be kept in the loop about schedules for the programs of interest to you.

You can also go to our Chapter Finder page to access information on other local chapter events or resources that are close to you.

Have you ever attended any of our local programs? If so, what did you think?

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Learning & Training in DeAnna's Blog

Posted by dabrown Jun 7, 2008

Today we had our 3rd GT - We did a reverse split for 50 minutes then had a shoe clinic at our local Fleet Feet. What great information! I can tell I'm a real newbie because I'm still learning all those things the rest of the folks are talking about! How do you know at what point to start using gels ? How do you know how much water to drink during the training? And I thought it was all about running / walking & raising money! I think this will lead to some really positive life changes.....not that I wanted to get out of bed this morning, but it gets easier every day!

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Live Fearlessly! in DeAnna's Blog

Posted by dabrown Jun 6, 2008

:D
The last year has been a blur - lots of changes and lots of challenges for our entire family. First Steven's dad, early 40's didn't last long after his bone marrow transplant for leukemia....just a few months later Don's told he needs a heart transplant.....all at the same time Sandra's brain tumor spreads and she finally lets go peacefully in early April....It's so hard to watch people that you love fight a disease that just seems to take the light out of their eyes. Even through Don's heart failure, we've been truly blessed to have a wonderful team taking care of him and great support from our families. The primary reason for stepping out of safe zone and into TNT is to help give back for all the blessings we've recieved during Don's care and to honor our dear friends. The secondary reason is the realization that +LIFE IS MEANT TO LIVE FEARLESSLY+! Why sit by each day watching others accomplish things I've always wanted to try, like training for an endurance event! Thanks for joining me for my jump without a net! We've only just started our training, but I really think I can do this!

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It all started for me when Richard Harvey passed away. We were at the funeral and I was truly inspired by the number of people that lined the wall. All of these people had dress clothes on and tennis shoes and medals galore on their necks. Then these same people all put a flower on his casket and they stuck together as one large group at the funeral and you could tell who they were and how much they cared about each other. And that is when Edwin and I decided it was our destiny at that moment to sign up with Team in Training. We had to do it for Richard and find out who all these wonderful people were that cared so much about each other.

When I first signed up I thought well this shouldn't be so hard. I've played sports for 12 years I am in great shape. Then we did the 5k Run for the Cookies, and I thought, "Oh, what did I get myself into." I kept asking Robin if she thought I would get faster or if she thought I would be able to run longer as the training went on and she always told me of course I could so I kept going for the next 5 months. I trained as best I could and surprised myself at how much I improved and my breathing improved and especially how much weight I had lost. And I admit I cheated some, I ate healthy most of the time but I couldn't deny my chocolate craving or my fast food cravings. I figured Richard ran multiple marathons and would always come over with a huge Taco Bell cup after he had just eaten a full meal there and he was doing good running (he he).

Half marathon day begin at 3:30 a.m. I can't remember the last time I was up that early. But I woke up refreshed and awake. I stood up from bed and my knee was swollen. Probably slept funny, but it hurt. I just kept thinking this is the last thing I need today and I am going to keep going no matter how bad it hurts. So I headed downstairs, took pictures, and boarded the bus. The bus driver was funny. This guy was sitting in traffic for about 20 minutes and all I kept saying to myself was "We better get to the start line with plenty of time because I am not going to start late and jeopardize my chances of being swept or it will be this guys butt for sure." So finally he figured out he could go around and off we were. We got to the start area and hit the bathrooms. I went once and kept thinking should I go again like John "The Penguin" said or should I go drop off my bag or should I stretch. There were tons of thought running through my head at that point. So finally I made my way to the start line and found my corral. All the way in the back, so I looked around for other Team Tally people and found Michelle W. I was so happy and we were chatting and the start gun went off. I was surprised because the corrals moved very quickly or at least it seemed that way. I made it to the start line in no time and I was off.

I remember passing people hanging out on their balconies and the helicopter flying overhead. There was one lady in her bathrobe waving and holding signs on her balcony, I just thought why you would get up this early to come outside in your bathrobe. Of course I know why to cheer us on. DUH! There were two ladies in front of me that had a sign on their back that said this was their 18^th^ marathon. They were walking the whole marathon. Holy cow, that is absolutely amazing. There were people everywhere. I was more focused on everyone around me and watching the Elvis' in skirts running by. It was like Mardi Gras but everyone was running the whole time. The first half a mile my legs started cramping but I kept running knowing what Robin, Erin , and Sara said all season that if I kept going it would work itself out. And it did. By the end of mile 1 my legs no longer hurt and I knew this was going to be a great time. I got to about mile 2 when Dalisha and Tiffany came up. I tried to stay with Tiffany but man she is fast. So Dalisha and I ran/walked together. It was about mile 2.5 when I saw a sign from a Leukemia survivor. It was incredible the support they had for us running. Seeing the survivor made me feel like I could run forever for her. I started the lip clenching as if I was going to break down, but then I thought man I have 11 more miles of this I have to stay strong and I can break down at the end if I need to. So I kept going. Mile 3 "The doghouse" was really cool. There was some radio guy yelling and barking and there was someone dressed in a dog costume. I made sure to high five him for being out there and cheering us on.

At a certain point on the course I recognized the aircraft carrier that Edwin and I had seen the day before when we were sightseeing. It was incredible running by the water. The breeze was awesome and the water was gorgeous and there were boats everywhere. There was a Boston terrier trying to play with a huge yellow lab and the lab was just laying there trying to sleep. It was peaceful. It was about at that time I felt like I had support from above and that Richard was right there with me. Again I almost broke down in tears and had to hold it in. When I turned the corner for 6.5 miles I saw Tina on the corner of the street cheering in some really big glasses and purple stockings. I was so happy to see her I ran up cheering with her and gave her a big hug. I was glad she was there and I saw someone I recognized. That gave me even more energy and I knew I could do this. I ran a 13 minute mile after that. And I knew I was half way done.

At one point we were on the freeway running. I was trying to get on flat ground so I would start at the top of the road and run down, then I would start from the bottom and run up and I did this for a while. It was fun and I am sure people were thinking what is that crazy nut doing up there. I remember running past a bunch of guys wearing TNT purple singlet's and had balloon boobs underneath. They were awesome. One guy gave me a high five and then I head downhill for another fast run. I made sure at every downhill I would run to make sure my time was getting slower.

At about mile 10 or 11 I saw Robin on the corner cheering as I came around. She snapped pictures and joined me for the run/walk. I am pretty sure I talked her ear off at that point telling her everything she already saw in the past 10 miles, but I was so excited to be close to the finish line and to have her run me in to the finish line. When I got to mile 13, I had a crazy thought cross my mind. I thought hey since I am 40 minutes ahead of the sweep time I should keep going, it's only 6 more miles to the next sweep and then I am home free and I can finish the whole marathon. And right as my thought finished I snapped back into reality and my feet told me you better not. So at the 13.1 clock when my chip beeped I stopped running. I thought that's it I finished. And I was trying to get good poses for Robin to get pictures, and then some guy in front of me said half marathon keep going around the corner through the finish line. Of course there was so much going on I had no idea where to go and just followed people. I crossed the finish line trying to go slow enough to find Robin and her camera. I walked over and got my medal and some PB&J and sat down.

Sitting down was probably not the best idea. But I waited a few minutes, relaxed and then headed for the shuttle to the finish line. Edwin and I were texting back and forth so I knew what mile he was on and how quickly I needed to get on the bus. I called everyone in my phone. I called my Dad and almost broke down in tears, then I called my Grandma she was so proud of me. While I was on the phone with my Grandma someone came up behind me, put their arm on my shoulder and said "Richard would be so proud" and walked away. I lost it there. The tears began rolling and there was no holding back. It was at that moment that I realized the accomplishment I had achieved and who this was all about. I did it all for Richard and he inspired me till the end. I boarded the bus and headed for Edwin at that point. I called my Mom and we talked on the bus ride over. When I saw Edwin cross the finish line, I teared up again but this time was his time to break down and I was there for him. We made our way to the tent and sat down with the team and ate some food and more food until we were stuffed.

This whole experience was hard but it was well worth everything. The training was awesome and I felt like I was definitely more prepared then most people not with TNT out there. I knew what to do at the water stops; I knew when to eat my Luna moons, and what to do after I finished the race. I couldn't have done this with without an amazing coach and team leader. I was thinking about Edwin doing Disney in January 2009 and how it will be so much different. I am definitely going to miss doing everything as a team but maybe when I work up to the 26.2 miles I can do it again with such a wonderful group of people. Thank you for everything.

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