Brain Power 5K

My friend Kelly, aka twin Sis, is the founder and the head honcho of Brain Power 5K.  Let me give you a little back story on how I know Kelly and why I'm so passionate about her cause.

Kelly and I met back in the spring of 2010 when I was training for the Danskin bike and run portion.  My knee was acting up so I ended up doing just the bike portion.  She was assigned as my runner and it's been twin sis ever since.  The twin Sis thing came about because I'm 366 days older than her and we were both diagnosed in November but she had brain cancer and I had breast cancer.  One day we had on the exact same shoes so we started celebrating our birthdays together and started calling each other Sis!

That is how we met and she's an all around amazing person but let me share her compelling story.  She just had her daughter when she had a grand mal seizure.  Thankfully her husband was home and heard her seizing in the other room from the baby monitor.  She had to have brain surgery and, as you know, things are never the same after surgery.  I won't begin to explain how things changed for her because I don't understand but it did.  She couldn't find local resources so she started Keep Austin Aware.  That eventually morphed into the Brain Power 5K where she raises funds for the Dr. Marnie Rose Foundation for brain cancer research at the University of Texas MD Anderson Cancer Center as well as pediatric initiatives at Children's Memorial Hermann Hospital.  The race takes place September 9th in Round Rock.  Details can be found via Facebook or the link above.

Kelly raised over $20,000 last year and her goal is to raise $30,000 this year.  Besides being her Sis, I've always been one of her biggest fans.  I'm the Race Chair this year and am very honored to be in this role.  Please consider donating, running or sponsoring this race.

Upcoming Webinar

If you're so incline, I will be part of the Breast Cancer Action Webinar next week.  All the dets are below.  Just a reminder that this case and anything in this blog is based on my personal opinions and are not tied to any organizations that I am affiliated with.  

Free Webinar: Take Back Our Genes: Ending the Patents on Breast Cancer Genes

Please join us on Monday June 25th or Tuesday June 26th for this important free webinar: Take Back Our Genes: Ending the Patents on Breast Cancer Genes to learn about how one company’s control of the BRCA genes creates barriers to research and testing that could endangering your health and the healthcare of hundreds of thousands of women.

In 2009 Breast Cancer Action signed on as a plaintiff in the patent lawsuit challenging Myriad Genetics. The lawsuit, filed by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, challenges the validity of the patents that grant Myriad Genetics control over the BRCA1 and BRCA2 (the “breast cancer”) genes. Myriad’s monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer. It also limits women’s ability to get second opinions when they receive ambiguous test results, which happens disproportionately to women from ethnic minorities, including African-Americans, Hispanics and Asian-Americans.
We are the only national breast cancer organization named as a plaintiff and we were able to take this stand because we had no conflicts of interest: we don’t take money from companies that profit from or contribute to cancer and because our work demands patients should always come before profits.
The webinar will be presented by BCAction’s Executive Director, Karuna Jaggar; Sandra Park, Staff Attorney for the Women’s Rights Project at the American Civil Liberties Union; and Runi Limary, breast cancer survivor and plaintiff. Topics to be covered include:

• Why BCAction opposes gene patenting and why it is important for women
• The impact of gene patenting on underserved communities
• The status of ACLU’s lawsuit challenging the legality of patents on human genes
• Real stories of women’s experiences with gene patenting 
• How you can get involved

Join us on Monday June 25th 3pm PDT/6pm EDT or Tuesday June 26th 10am PDT/1pm EDT for this free one-hour webinar to hear the real story about the effects of gene patents on women’s health and to join us in opposing corporate control over our bodies, our genes, and our health.

Register for Monday June 25th 3pm Pacific Daylight Time/6pm Eastern Daylight Time

Register for Tuesday June 26th 10am Pacific Daylight Time/1pm Eastern Daylight Time

For your convenience, we are offering the webinar at two different times. Click on the links above to register for the time and day that works for you.

 

Mamma Jamma # 3

It's that time of year again!  On October 27th I will participate in my third Mamma Jamma Ride as a rider. The Mamma Jamma ride means so much to me.  It's such a sense of community, a great way to honor those touched by cancer and to remember those we've lost to it.  It's knowing that one person can make a difference.  The funds will help people deal with cancer whether directly or indirectly.  I've met such amazing people in the training ride and have found a love for cycling.  Lucky for me I've found a cardio exercise that I can compromise for the bad knee and having to give up jogging.  I just rode 25 on a windy and hilly Palmer on Sunday so I should be doing the 45 miles as long as my knee continues to feel good.  Anyway, below is what is on my fund raising page.  Please consider donating, really even $5 helps.  

Mamma Jamma Kick Off Party in May

 
This is why I ride
Thank you so much for visiting my page!

I was diagnosed at 28 on November 16, 2005 with breast cancer. Getting cancer at a young age was the best and worst thing to happen to me. I feel fortunate that I "get it" at a young age about the meaning of life. However, there is a sense of sadness how cancer takes away a part of your innocence. I'm doing this ride in memory of three sweet fallen sisters: Becky Davis, Shannon Iezzi-Watson, Alison Thibert and others that we have lost along the way.

I've been so fortunate to meet amazing survivors that have helped me through this difficult journey. The BCRC and Pink Ribbon Cowgirls made this experience a little less frightening and lonely. Survivorship is also something else to deal with. Having a network of breast friends makes a world of difference. Who better else to "get it" than the people that also experienced it?

The 9 other organizations that this ride supports are also wonderful. I've been fortunate to do some training with Team Survivor and have worked with Wonders and Worries to help out the children in our group.

Any contribution helps! Please consider volunteering, riding or making a donation. Even a $5 donation helps!
2009:  I was a volunteer getting inspired to ride by the amazing riders. 

2010:  I caught the bug and rode 72 miles at Mamma Jamma in 6 hours on my mountain bike. It was hot and humid but the amazing volunteers and the purpose of the ride carried with me throughout the ride.

2011:  I rode 42 miles on my road bike but only trained for the 27 miles.  My knee feels great thanks to my PT! Many thanks to all the volunteers and those that made this ride possible.

2012:  I'm hoping to ride 42 miles again this year. 

Much love,
Runi

Advocacy and Washington DC

I attended the NBCC 2012 Annual Advocacy Summit in early May.  I do a great deal of work with patient advocacy and to raise funds and awareness but my work with advocacy is limited to signing on to petition and my involvement with the case against gene patenting.

Marj and I (it was VERY windy)

NBCC's goal is to end breast cancer in 2020 by focusing on what causes cancer, creating a vaccine and/or focusing on breast metastasis.  On lobby day the Texan group spoke to our Texas Representative to get those of them that have not already signed on to the HR 3077, the Accelerating the End of Breast Cancer Act.  I attended five sessions and we spoke with the assistance each time.  One of the five were real receptive and it was promising for those who didn't sign on to sign on.  Our work paid off because to this date, we have 14 of 32 Texas members of the US House of Representatives to sign on.

Thanking a Representative for signing on already

Supreme Court

Being at the Advocacy Summit, participating in lobby day and sitting inside the Supreme Court really resonated that to me that one person can make a difference in this word.  It took one person's vision and passion to create an avalanche of change.  All the strides, all the clinical trials, all the medical advances are because of people that voiced their opinion and made things happen. 

My goal is to continue to make a difference each day but I'm much more hungry to find a way to make a lasting impact. Photos to come

Sue and I

Shala and I

Also, talk about small world!  I was able to meet up with a dear friend in that lives in Albuquerque but was in DC with her students!  I was also able to meet up with an old high school friend that lives in DC!  My trip to DC was very memorable for many reason.  Geez DC really needs to have more museums and things to see and do.