Want to Make a Difference?

LauriesMug_edited-1Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely with but never meet–or never even talk to for that matter, with sole reliance on e-mail. Very weird to me, but very modifiable.

Cac2PageFortunately, for me, I finally had the opportunity to meet some of my comrades in the childhood cancer community in person, thanks to the Coalition Against Childhood Cancer (CAC2) Annual Summit that was held in Our Nation’s Capital on June 25, 2014.

June was an extremely busy time for me, with both work and family commitments. However, as I always say (and I say it A LOT these days), you make time for the people and things that are important. And attending this meeting was VERY important to me. No way was I missing it, barring catastrophe. There were some people who I just had to meet, and it was where I needed and wanted to be. We shipped the kids off to “grandparent camp”, and off I went.

If you are not familiar with CAC2, it is an organization formed in 2013, or should I say a collection of childhood cancer organizations (and people like me), providing opportunities to form a unified front for such an important cause that does not get enough attention. The main mantra for CAC2 is to put children with cancer and their families first in everything we do, and there are 4 main areas or “pillars” that the organization focuses on: awareness, advocacy, family services, and research.

I am not affiliated with any specific childhood cancer organization but was able to join as an individual member. Most members of CAC2 have a personal connection to a child with cancer, but I do not. I am just someone who believes that children with cancer should be a priority population for research, but I know enough to know that they are not. So I joined the childhood cancer community in general, and CAC2 in particular, to find ways that I could help in some way–any way.

Laurie&BillIt was quite the story, if you can’t tell by all of the moving hands!! That’s me with another individual member, William Burns. He was an invited speaker but also wanted to come to personally thank CAC2 for the outpouring of help that it’s members provided in support of his nephew Josh Hardy, of the #SaveJosh campaign. Josh was dying and needed a drug that was in a clinical trial but not available. Without it, he was going to die.  The CAC2 group ran a successful social media campaign and got the drug released to him in time.

To say that it was worth a trip was an understatement. I got to meet several people who I have been working with over the past year, in a variety of different ways. I got to meet lots of new people, wonderful people who all share the same mission: To put an end to the suffering and loss that comes with childhood cancer, by making the kids the priorities that they deserve to be. There are a lot of exciting things in the hopper, and I believe that there are lots of good things to come—not for me, but for kids with cancer.

The meeting itself was a 1-day event, consisting of a series of presentations by individual speakers. There was also an enlightening panel discussion about barriers to drug development that included representatives from the National Cancer Institute and pharmaceutical industry. The discussion got lively needless to say—some questions made it into a bit of a “hot seat”, but everybody left unscarred with the help of a good, effective moderator.

LauriesPanel_edited-1 Distinguished panel, discussing barriers to drug development for childhood cancers

Overall, in listening to the presentations and discussions, it couldn’t be any more obvious that we are all on the same ship—that every single person in that room was longing for more research into better treatments for childhood cancer, but that insufficient funding is standing in the way. There are so many people who are so passionate about childhood cancer, beyond those who are formal members of the childhood cancer community. But it is equally obvious that there is no quick fix. The “system is broken” and has been for some time. There is a lot more noise that needs to be made via a unified call to action, and that is where CAC2 can and will make a difference. It is so humbling to be part of it, I am so appreciative to those who pointed me in the right direction. An extra loud shout out to Richard Plotkin of the Max Cure Foundation, Vickie Buenger (CAC2 president amazing woman extraordinaire!), and Beth Anne Baber of  The Nicholas Conor Institute (TNCI) and her dad, Joe Baber (Team Captain, Four Square).  Crossing paths with “ya’ll” led me straight to CAC2, and for that I am so grateful!

If you are passionate about childhood cancer and are just learning about CAC2 now, you should join me. Not to be pushy, but you really should join—no better time than the present. You will be expected to get involved in some way, and there are lots of options so you are sure to find a way to be productive and make a meaningful difference. One person can and will make a difference in this setting. And you are sure to meet some real-life heroes, who will inspire you to work harder with whatever amount of time you can find. You can find the time, I did and will continue to do so.

For more information, please contact me directly (laurie.orloski@pharmite.com, or you can easily find me on LinkedIn or Facebook) or check out the very awesome CAC2 web-site: http://cac2.org/

Spread the word by sharing, we need more volunteers, maybe someone you know would LauriesMug2_edited-1want to join CAC2 if they only knew about it! No personal experience with childhood cancer required….

I started with the mug and am going to end with it, because the mug knows best.

Author: Laurie Orloski

 

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This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

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