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TEAM SARAH

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , on January 16, 2015 by runmyssierun

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I met Sarah shortly after I ran my first marathon in the summer of 2012. She is like a lot of other little girls and being the mother of two boys, and always wanted a little princess of my own, I gravitated towards her naturally.

Whoa… wait a minute. It must be more than that. Way more than that. Because everyone always gravitates towards her naturally. You can’t help but love this girl the moment you get that first giggle from her!!! Sarah loves to play and run and jump and race and challenge you on the monkey bars. She gives big bear hugs and laughs from deep within her belly. Sarah is a special needs child, but you would never know it. She’s special because she needs help fighting cancer.

At this time, if you’re anything like me… you’d skip all this jargon and skim right over to the pictures I posted of her and think to yourself: Are you kidding me? This little girl has cancer? But she’s so happy and looks so healthy!!! No way!!!

Si guey.

And here’s what really gets me… she and her mother, Anita, are at almost every single one of my practices and events ever since that first meeting in the park. If you’ve read my blog before or followed any of my social media accounts and have seen pictures of me running along the 2nd Street trail, swimming at a pond, lake or video at the Bay on South Padre Island or cycling along the back roads in Mission, chances are that all that footage was taken by Sarah’s mom. Now think back… that’s a whole lot of footage documented!!! Yep! And I can say with all my heart, this woman is probably one of THE most devoted mothers I have EVER met in my life… and I’ve known a lot of great moms!!!

Ever since I got into my health and fitness kick, I’ve heard so many people say,”I would go run (or bike or swim) with you but I just don’t have the time because I have (insert excuse of your choice)”.  I always smile and never push, but Anita always comes to mind when I hear people say things like this.

Anita has a child fighting cancer. A NORMAL day of a mother is hectic enough, add to this being a mother of a special needs child with cancer. Now pile on 20-some triathletes who do various workouts all throughout the day all over the county and events all over the State of Texas. Now add on about 50 runners with various distance marathons trampling all over everywhere… and she’s always there.. WITH A SMILE ON HER FACE…and a camera to record YOUR smile.

In February of last year, while at a “mission moment” run at Bill Schupp Park, Anita announced that Sarah was cancer free. I wrote about it in my blog here: https://runmyssierun.com/2014/02/16/blurry/

Her mother, Anita, took center stage for our mission moment. She announced that Sarah had been declared officially in remission earlier this week.

Anita was the first person I ran to when I embarrassingly DNF’d at CapTex last year. I wrote about it here: https://runmyssierun.com/2014/05/29/capital-of-texas-triathlon/

Ashamed, coughing and crying, I ran straight to Anita. I wrapped my arms around her, dug my head into her shoulder and cried out “I didn’t make it. I didn’t make it”

It should be of no surprise that when Team in Training decided to create a TEAM SARAH and asked if would like to be a part of it, a split second hadn’t passed before “YES” blurted out. How could I refuse the adorable little girl who steals all my pickles from my SAG kit?

This is Sarah Morales. She has been my honored hero for several seasons and now I have the honor of being on HER team.

Would you please be on her team, too? We are raising $100,000.00 in her honor so that other children like her can be healed and get assistance. Please give what you can here on this link:  http://pages.teamintraining.org/sctx/nbhtri15/mcardenasb

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sweet sarah 1 sweet sarah 2

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Patients’ Access to Treatment Act

Posted in Uncategorized with tags , , , , , , , , , , on July 22, 2014 by runmyssierun

I got this email today regarding my lobbying efforts in Washington DC earlier in May of this year. 🙂

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Dear Myssie,

Great news: thanks to advocates like you,there are now 133 Congressional Representatives signed on as co-sponsors of the Patients’ Access to Treatments Act!

That’s a 23 percent increase in support in the two months since our efforts on Advocacy Day – and a huge step toward legislation that could change the lives of cancer patients across the country.

Every day, our elected officials hear from constituents about competing causes. These new co-sponsors received thousands of phone calls and letters from LLS supporters and listened to your personal stories in our face-to-face meetings on Advocacy Day. The sheer passion of our community inspired them to join this movement – to have them standing with us on this issue shows that they’ve made cancer patients a top priority.

This bill is critical for helping blood cancer patients who are struggling with astronomical fees from “specialty tier” drug pricing. Essential medications are out of reach for many who need them to stay alive. The Patients’ Access to Treatments Act would require private health plans to limit patient costs for “specialty tier” drugs, and ensure access to vital cancer medications. Thanks to you, it’s one step closer to becoming a reality.

I want to thank you for standing with us on this issue. Together, we are making a difference for cancer patients and their loved ones.

Sincerely,
Brian Rosen
Brian Rosen
Chief Policy and Advocacy Officer
The Leukemia & Lymphoma Society

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#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.

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