Brain Tumor Awareness Month - 1 Week Remains

I am doing pull-ups for a cure, and many others have joined me.  But there are so many other things happening during this month.  I received the information below from the National Brain Tumor Society.

National Brain Tumor Society is celebrating Brain Tumor Awareness Month with exciting events across the country. As always, we are grateful for the thousands of supporters who have come out to increase brain tumor awareness and join the fight for a cure. Thank you!

Event highlights:

• The San Francisco Bay Area event on May 5 was the first Walk of the month and brought together over 2,500 participants to raise over $500,000.
• D.C.'s Weekend of Hope began with the annual Golf for Hope event on May 4, followed by an inspirational Night of Hope Benefit with American Idol® star David Cook on May 5, and wrapped up with the Race for Hope-DC on May 6, bringing together over 11,000 participants to raise over $2M for brain tumor research!
• The first Ride of the year, the Boston Brain Tumor Ride on May 20 brought together over 600 cyclists and raised over $500,000 to date.
• That same day, the Team Billy Ride and Walk for Research in Saratoga Springs, NY raised over $60,000 with over 300 participants.

Although May is coming to a close, there are always opportunities for you to help raise brain tumor awareness. Learn more about the many ways you can get involved with us.

Counting Down... Just Over 1 Week Remains

Just over one week is remaining in my Pull-ups for a Cure challenge.  I have done max rep pull-ups every day since May 1.  Sometimes I was only able to get one pull-up.  One day, after a couple of tough upper-body workouts that included kipping pull-ups and chest-to-bar pull-ups, I was not able to get a single strict pull-up.  But I tried.  And one day, I was able to get 5 consecutive.  So, it varies, but I have not missed a day.

Kitsap CrossFit has joined me in the challenge.  Some are counting total pull-ups for the day, some counting consecutive, and some counting a specific set.  Also, some are doing strict, some kipping, and some assisted.  They are all doing what they can, which is so amazing.  As of today, Kitsap CrossFit has completed nearly 1,800 pull-ups!!!!!  I have only done 45 of them! 

I am so inspired by what they are doing.  People are getting stronger and people are getting creative about where they do their pull-ups.  I imagine it will be an odd sight this weekend at the CrossFit Northwest Regional competition, to see random spectators in Kitsap CrossFit apparel, doing pull-ups in odd locations.  If you see us, say hello and join us for a pull-up or two.

Have you been doing pull-ups?  If so, how is it going?  Send pictures!!!

One Week Down – May 7, 2012

I have now been pulling up for a week.  And many of you have joined me.  Do we remember why we are doing this?  Some are doing it for me, and thank you for that.  But we are also doing it for something much bigger.  We are pulling for a cure – to drive awareness around this horrible disease, which is so debilitating.  Remember the facts from the National Brain Tumor Society:

• There are over 600,000 people in the US living with a primary brain tumor diagnosis.
• More than 60,000 adults and children will be newly diagnosed this year.   This year alone!
• Because brain tumors are located at the control center for thought, emotion and movement, their effects on an individual's physical and cognitive abilities can be devastating.  I know about this first-hand, and work on improvements every day.  I have been blessed that my situation was not worse.
• Brain tumors are the leading cause of death from solid tumors in children under the age of 20, and are the third leading cause of death from cancer in young adults ages 20-39.   Leading cause of death in children…  No child should have to experience this.  Third leading cause of death from cancer in young adults…  Third.
• Brain tumors may be either malignant or non-malignant (“benign”), but can be life-threatening in either case.  Depending on the location in the brain, even benign tumors can be life-threatening.

Today I received this email from the National Brain Tumor Society (NBTS):

Tomorrow (May 8)  is Head to the Hill, the National Brain Tumor Society’s annual advocacy day cosponsored by Accelerate Brain Cancer Cure. One hundred brain tumor advocates from 21 states will meet with their Senators and Representatives in Washington, DC to advocate for public policy issues that are critical to the brain tumor community. We need you to be a part of this important effort, and we’ve put together the tools you’ll need to join us right from home tomorrow.

The Head to the Hill participants are talking to their legislators about two issues that the brain tumor community needs Congressional support on:

NIH Funding: The National Institutes of Health (NIH), the largest funder of brain tumor research in the country, must continue to receive the funding it needs to support brain tumor research.

Oral Chemotherapy Parity: We know that many brain tumor patients rely on temozolomide, an oral chemotherapy, as the only available form of chemotherapy treatment and that some health insurance cost-sharing schemes can create significant cost burden. There is legislation in the House of Representatives, HR 2746  The Cancer Drug Coverage Parity Act, that would require insurance companies that cover oral chemotherapy to do so on a no less favorable basis than they cover intravenous chemo. Currently, there is no companion version in the Senate.

Please call the offices of your Representative and two Senators tomorrow and tell them that you stand with your fellow brain tumor advocates in DC. We’ve created a tool that provides you with the phone numbers of your legislators’ offices and a script to help you get your message across. Please fill in the report form when you’re done and let us know how your calls went.

You may not have been able to travel to DC this week, but you are a critical part of this effort. Let’s kick off Brain Tumor Awareness Month together by standing strong for important brain tumor issues in Congress.

Thank you for your advocacy.

David Arons
Director of Public Policy

I will be making some phone calls tomorrow.  If you feel so inclined, you can as well.  I have a perspective on the cost for the drug, temozolomide, as this is what I have taken.  It is very expensive.  I also do not want to see the NIH lose any funding and instead would like to see this increased.  A few simple calls for a cure, and a few more pull-ups.  So, if you have the time and feel so inclined, make the calls.  The NBTS has made it easy to get the phone numbers and has provided a script.  Just follow the link in the email above.

Days 1 & 2 – May 1 & 2—60,000 For A Cure

I am so humbled by the out pour of love and support for my pull-ups for a cure.  Many at Kitsap CrossFit have started doing their pull-ups.  Dan didn’t want to miss the first day, so made do with doing them in a hotel room while traveling.  He made a video, which I hope to be able to post soon. 

The nice thing about pull-ups is that they can be done almost anywhere there is something to hang on.  I have done them from trees, from scaffolding, and from equipment pipes.  I look at everything as an opportunity for a pull up.  Today I had to figure out how to do them at home, without a bar.  I went partway down some stairs on the side of the house, and grabbed the deck above my head, and pulled.  Suffice to say…  I won’t be using this spot again.  There really was not much to hold on to, and when I came off, the uneven ground almost caused a wipe-out!  See for yourself…

One last thing…  If you are doing pull-ups, keep track of all that you do.  Tally them up.  My friend, Caroline, made this nifty spreadsheet, if you'd like to use it to track your pull-ups.  It will keep a running total of how many are being done.  It will also allow us to see if we are improving.  Right now, I can only do 1 max-rep pull up.  Maybe by the end of May I will be able to do 10 without letting go.

At the end of May, I will gather everyone’s totals, and, who knows… maybe, as a group, we can do 60,000, one for each person who may be diagnosed this year.  Can we?  Can we do 60,000 pull-ups for a cure?