Archive for Nashville

#ideclare4lls – the squeaky voiced lobbyist from TEXAS

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , on May 9, 2014 by runmyssierun

I spent the last few days in Washington, D.C. with some pretty phenomenal cancer fighters – we made our voices heard on the Hill.  Y’all know that when someone else says it better than I do… I just let them. This post is taken from LLS Interim CEO Dr. Lou DeGennaro’s blog.

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With almost 400 cancer fighters declaring the end of cancer… I figured I would help you find me… I’m at the VERY top of the group. You’ll see three heads (I’ll be the third head) and mine is (if you imagine a clock, I’d be right at the 12) right smack at the top center

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After a group photo on the steps of Capitol Hill, where nearly 400-strong raised our hands and declared Cancer Ends With Me, (#Ideclare4LLS) we all – patients, survivors, families, volunteers, staff – dispersed to meet with our district legislators. Our objective: to urge our legislators in both Houses of Congress to support two critical pieces of legislation that would improve access to therapies for blood cancer patients.

 

One bill, HR 460, would limit cost-sharing for patients who require specialty tier drugs. The other, S1365, would allow a patient on Medicare to appeal if a prescription drug they need is placed on a non-preferred drug tier, meaning it comes with very high out-of-pocket costs. The law would allow patients to appeal to have the drug placed on a preferred drug list with lower coinsurance, if their prescribing physician deems it the patient’s only option.

 

While delivering our message, many advocates shared their stories with the representatives.

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“What’s the point of research if patients don’t have access to the therapies,” Ethan Zohn, star of Survivor: Africa, and a two-time Hodgkin lymphoma survivor, told Morgan Brand, an aide to Sen. Charles Schumer (D-NY).

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We were treated to two more special speakers during our morning session. Sadie Floyd is a 22-yer-old competitive drag racer who was diagnosed with acute lymphocytic leukemia when she was 2. She has committed to using her racing career as an outlet to get the word out about blood cancers.

“What LLS does on a daily basis is why I am alive today,” she said.

 

Rep. Anna Eshoo (D-CA) urged us on, saying “I love to be with advocates. You have power.”

 

We concluded our three day conference with a special performance at D.C.’s Union Station by Charles “Chip” Esten, a singer and actor, known for his role in the ABC drama series “Nashville.” Esten’s daughter is a leukemia survivor.

 

After the devastation of hearing their daughter had cancer at age 2, Esten said learning that there were treatments with a good chance of success turned their fears to hope. “That hope didn’t come from nowhere; it came from research and it came from funding that pays for research.” Today his daughter is 14.

** BUT Chip did something way more personal for ME, Lynda and Dezma:

 

As we gathered at Union Station, passersby stopped by to visit our Awareness Wall, placing stickers declaring Cancer Ends With Me and signing our petition to support the legislation discussed above.

 

Over the past three days of our conference, “Leading the Way to a World Without Blood Cancers,” we heard from renowned researchers, survivors, families and volunteers and shared best practices. We celebrated a major milestone – surpassing $1 billion in research investment – and we brought our cures and access agenda to the Hill. I leave feeling energized and knowing that all of the participants feel same the same – ready to keep fighting to make blood cancers a story of the past. LLS is making cures happen today, not someday.

Millionaire Winner

Posted in Uncategorized with tags , , , , , , , , , , on November 15, 2013 by runmyssierun

“Nashville” Star Charles Esten Plays “Who Wants To Be A Millionaire” with a Mission in Mind

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NEW YORK (November 14, 2013) – Actor Charles Esten, who portrays Deacon Claybourne on the hit ABC series “Nashville,” will appear as a contestant on “Who Wants To Be A Millionaire” with new host Cedric “The Entertainer” in episodes airingWednesday, November 20 and Thursday, November 21, and will donate his winnings to The Leukemia & Lymphoma Society (LLS). Esten makes “Millionaire” history by becoming the first celebrity contestant ever to make it all the way to the $1 million question on the daytime version of the show! Will he go for it? Tune in November 20 and 21 to find out!

Esten will donate all of his winnings to LLS, the world’s largest voluntary health organization dedicated to funding cures and ensuring access to treatments for blood cancer patients. Esten’s 13-year-old daughter, Addie, was diagnosed with leukemia at age 2 1/2 and, thanks to advances in treatment, is thriving today. Because of their personal connection to blood cancer, Chip, his wife Patty, and the entire Esten clan are strong supporters of LLS.

“It was a dark and scary day when we found out that our Addie had leukemia. The first ray of light was the reassurance from our doctor that there was hope – there were medicines and procedures that could help our little girl. All that hope, and all that help, came from research?research made possible with funds raised by LLS and other organizations. That’s why we’re so thankful and committed to LLS. I’m excited that a fun experience on ?Millionaire? can be used to raise money and recognize the serious work of LLS, which is making a positive difference for blood cancer patients and their families.”

“We have one goal:  A world without blood cancers,” states LLS President & CEO John Walter.  “To date, we have invested nearly $1 billion in research to advance therapies and save lives. We are so grateful to Chip Esten and his family for their support to show that we are helping to save lives not someday, but today.”

“Millionaire” airs weekdays in national syndication.  Check local listings or go tohttp://www.millionairetv.com for time and channel.

Click here to view photo of Esten on “Millionaire” set.

About “Who Wants To Be A Millionaire”
As America?s richest game show, “Who Wants To Be A Millionaire” continues to be the only game show to offer a $1 million prize to each and every contestant. Since “Millionaire” debuted in syndication in 2002, contestants have won over $80 million! “Millionaire” is produced by Valleycrest Productions Ltd. and is distributed by Disney-ABC Domestic Television. Rich Sirop is the executive producer. “Millionaire” is taped at Metropolis Studios (106 & Park) in New York City.

About The Leukemia & Lymphoma Society
The mission of The Leukemia & Lymphoma Society (LLS) is to cure leukemia, lymphoma, multiple myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.

Founded in 1949 and headquartered in White Plains, NY, LLS has chapters throughout the United States and Canada. To learn more, visit www.lls.org. Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 6 p.m. ET.

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