OMG Conference Wrap-Up! "We Are Not Alone"

This week is the 10th annual  National Young Adult Cancer Week. Why should you care? According to the National Cancer Institute:

* Nearly 70,000 people between the ages of 15 and 39 (collectively called AYAs) are diagnosed with cancer each year.

* Cancer kills more people in the AYA age group than any other disease.

* Even though survival rates have steadily improved for children and adults who have cancer, survival has lagged behind for AYAs.

* The roadblocks: low number of clinical trials for AYAs and poor participation; delayed diagnosis of primary cancers; inadequate treatment practices and settings for AYA cancer patients; poor understanding of the biology of AYA cancers; limited access to care and insurance coverage for AYA cancers; limited emphasis on prevention and early detection for AYAs; and unique AYA psychosocial and supportive care needs.

These past few days, I had the opportunity to spend time with the 550 most inspirational people I’ve ever met at Stupid Cancer’s annual OMG Cancer Summit for Young Adults in Las Vegas, a conference for young adult patients, survivors, and caregivers.

We came from all walks of life: some of us had cancer when we were children; other were adults just starting their independent life. Some of us lost breasts, testicles, and limbs; others didn’t even lose their hair. Some weren’t even old enough to drink; others were 20 years in remission. It wasn’t a contest or a pity party, because we all had one thing in common: we had cancer. We were put through an emotional, mental, and physical challenge. It didn’t matter if we were still in treatment or out of treatment, we all had one goal: to get busy living and share our experiences with others. (If you have 10 minutes, here’s a documentary put together by Stupid Cancer, the premier young adult cancer organization.)

It’s a club you don’t want to belong to, but like founder Matthew Zachary said with a nod to Olive Garden, when you’re here, you’re family.

This weekend, I was with 550 people who understood everything I’ve gone through.  However, we must continue to educate, advocate, share our stories, and fight for other young adults. Please take the time to learn more about cancer in young adults. If you’ve had or have been affected by cancer, share your story.

We’re not alone.

Advocacy Action Center

Advocacy Action Center

Welcome to the 2012 Three Week Challenge! Over the next three weeks, advocates from around the country will be taking action to generate buzz in both Congress and the media about the Pancreatic Cancer Advocacy Day and the Pancreatic Cancer Research & Education Act (S. 362/H.R. 733), critical legislation that will help us improve pancreatic cancer survival rates. The challenges are easy activities that you can do from home in less than 10 minutes.

PET Scan Party

All the madness that occurs.
All the highs, all the lows,
As the room is spinning goes
We'll run riot,
We'll be glowing in the dark.

Coldplay, Charlie Brown

Mylo Xylo, 2012

A positron emission tomography, or a PET scan, is pretty similar to an MRI. From a visual standpoint, the machine looks like an MRI machine, only it's about 1/3 of the size in length. The best part about PET scans are that they barley make any noise. They're about as loud as an air conditioning unit, much quieter than the banging and knocking of an MRI machine. The biggest downside to this visit was probably all of the failed IV picks - after six attempts two were finally placed. I’d say that that is a pretty good downside for a hospital visit! The purpose of this scan was to further investigate the increase in density that was discovered in my brain tumor a few months ago, and to gain a better understanding of the cell type of the tumor so that we know what to do or what not to do next. I have a feeling that my next course of action will either be drastically new, or the brain tumor questions and probing will be put to rest..I should get the results within the next couple of days.

The last time I was at DMC Children's Hospital was in 2008. I was a patient there for a 5 day stretch that consisted of a continued EEG and sleep study. Within the first couple of hours of my day, an elderly volunteer came into my room and asked me what my favorite color was. I told him it was a close tie between blue and black..he vanished and moments later reappeared with a handmade fleece blanket! Who knew a cozy blanket could be so comforting. The downside to DMC Children's Hospital is that well, it's a children's hospital. As a 17 year old soon to be high school senior, sharing a room with a 6 month old isn't very much fun. I love little kids, but in those circumstances it would have been much more enjoyable to room with someone my age or older who can relate to procedures or common interests. I suppose that depending on the hospital, the older mentor-younger sage scale will always be teeter-tottering.

On the other hand, nurses and doctors working at a children's hospital typically outwardly express more energy, creating a warmer, friendlier environment. A particular nurse that I met on this adventure, Jane, went out of her way to make me laugh and build a patient-nurse connection. We discussed my plan to pursue a special needs education career path, and she even recommended a book to check out this summer - Musicophilia. Written by neurologist Oliver Sacks, the book explores how music affects the brain, human emotions, moods, etc. There are even documentations of how music has helped some of his epileptic and Parkinson’s stricken patients learn to thrive. I’ll let you know what I think once I’ve checked it out!

After the long day at DMC I kicked off summer with a bonfire celebration and pool party that went a little something like this..

RESPONSE TO HUFFUNGTON POST ARTICLE about "Nonmalignant" brain tumors

To the Huffington Post, Dr. Bederson and Ms. Crow:


While I appreciate your raising awareness about brain tumors by publishing this story, I would like to express my concern with two phrases used in your article; "benign brain tumor" and "likening the tumor to a wart."

Benign Brain Tumor: Understanding Sheryl Crow's Condition 

As a former physical therapist turned nonmalignant brain tumor patient, I have experienced first hand the severity of these tumors. I am glad you reference the location of the nonmalignant tumor, but the long term effects of a nonmalignant tumor can greatly affect quality of life and this issue needs to be addressed.


 While the mortality rates for the medical treatment of nonmalignant brain tumors are comparatively low when contrasted with certain other types of tumors/cancer, the long term impact following treatment of these tumors can have significant lasting effects. This may include short term memory loss, coordination impairments, balance impairments, alteration in affect/mood, chronic pain, seizure disorders, visual loss, difficulty swallowing and a variety of other life-changing symptoms. Nonmalignant brain tumors can be life-threatening as well. People diagnosed with these tumors need long term follow up scans to be sure their tumors are not growing. Those whose tumors have been treated also need follow up scans to detect possible tumor recurrence after treatment.


 It is very common for medical professionals to dismiss a malady that appears to be not as serious as a "cancerous" tumor. As a medical professional, I realize the short term emphasis is on treatment of the condition. As a 6-year nonmalignant brain tumor survivor, I think it is important that medical professionals and the general public understand the severity of specifically nonmalignant brain tumors. As a medical professional turned nonmalignant brain tumor survivor, I urge you to consider the long term effects of a nonmalignant brain tumor before dismissing a "benign" tumor.


Please do not describe a nonmalignant brain tumor as a "wart". The long term effects on a patient can be quite debilitating dependent on the location of the tumor, plus any deficits that occur following treatment. There's nothing benign about any brain tumor!


I sincerely wish Ms. Crow luck in her journey with this disease and her recovery.


Eric Anthony Galvez DPT
6 year meningioma nonmalignant brain tumor survivor
Founder, President mAss Kickers Foundation

Survivors & S'mores

The original mAss Kicker himself

San Diego - Mission Beach - May 25, 2012
What do you get when you combine an evening of sand, Survivors & s'mores? The 1st Annual YACS* Bonfire & Soiree, of course!


Our Soiree came complete with an amazing all-star lineup of cancer rockstars! Not only were we lucky enough to have Jenna Catalona from First Descents in town with the FD Mobile, but Eric Galvez, founder of mAss Kickers Foundation, Brandon Bethea, founder of Fin Forward, Amanda Hitt, founder of IAP4P & Trevor Jones, founder of Flex Watches all shared in the Survivor love... not to mention an eclectic group of Survivors, caregivers & advocates representing various Survivor organizations such as Stupid Cancer, LLS, Relay For Life, Keep A Breast & Young Survival Coalition.


Some of us have known each other for years, while some of us were meeting for the first time that night. Either way, regardless of our unique backgrounds, diagnoses or personal connections to cancer, we all came together to make friends, spread awareness & enjoy yet another successful San Diego Survivor event!

A beautiful Survivor sunset

There's something incredibly empowering about being in the presence of this many fearless, genuinely positive young adults who are all 100% committed to fighting cancer & celebrating Survivorship... it fills you with an energy that you can't help but share with everyone around you. Our bonfire was exactly that... the s'mores were just icing on the cake! :)


Check out the First Decents | Flex Watches video from the event!


* YACS = Young Adult Cancer Survivors :)

"Let's Kick it!" 2012 Charity Kickball Tournament recap

 San Diego, CA - Liberty Station. May 19, 2012 mAss Kickers Foundation hosted the inaugural mAss Kickers Foundation Charity Kickball Tournament. The event was created by four friends in the San Diego area that wanted to create a unique and fun event to support the efforts of mAss Kickers Foundation. The event was organized by Lyman Ng, Brent Glova, Joyce Tam, and Eric Galvez. With little event planning experience, the team was eager to attempt to create the event last year. But due to busy personal schedules, the event was difficult to get off the ground. The addition of Joyce Tam finally got the ball rolling and brought much needed event planning experience and structure to the table. We wanted to create a fun event to support newly diagnosed patients and our loved one affected by that diagnosis. mAss Kickers Foundation prides itself on creating unique events! Every summer, we partner with Hell Survivors Paintball Field in Pinckney MI to host our Annual TUMORS SUCK! Paintball Benefit. Eight San Diego based teams participated in the inaugural kickball event. Teams were encouraged to come up with their own unique team names. These are the teams/team colors:

• Sexual Chocolate - Burnt Orange
• Ball Busters - Red
• KickaDoodleDoo -Kelly Green
• The Jenemies -- Carolina Blue
• All-Stars - Lime Green
• SoCal Riot - Own Jerseys (Daisy Yellow)
• Self Esteem Busters - Grey
• Menace II Sobriety - Pink
• Event Staff - Orange/Gold

The morning of Round Robin group play determined the seeding in the afternoon competition. It was also a time for players to reacquaint themselves with their favorite elementary school reccess past-time. The Urban Eats food truck stopped by at lunch to provide delicious community oriented gourmet food for the event! The intensity of the afternoon games was heightened after the announcement of Individual Championship P.I.M.P. (Pugilistic Individuals Masskicking with Pride) Cups. The teams playing for the Championship and the Consolation Titles were: The Ball Busters-SoCal Riot and All-Stars-Sexual Chocolate. Congratulations are in order for the winners of the 2012 mAss Kickers Championship P.I.M.P. Cups, the SoCal Riot. Sexual Chocolate won the Consolation bracket! Everyone had a great time and we look forward to hosting this FUN event next year with a little more experience under our belt!

Special thanks goes to Cynthia Comacho of the Cabrillo Rec Center, Urban Eats, CreateMyTee, Joey Evans, Aaron Lebsack, Amanda James, Gabby Penn Farmer, Marie Pancotti, Lorraine Painko, Athena Feinauer, Mark Feinauer, and Jaime Schnable.

Inaugural mAss Charity KickBall Tournament 2012

We've learned that tumor/cancer survivorship needs a little more "attitude", AKA "thrivership."  mAss Kickers Foundation (MKF) was born out of the necessity to supply those affected by tumors/cancer with that attitude.  MKF has grown leaps and bounds since we were created, but we still want the newly diagnosed tumor/cancer patient to feel a little less scared after hearing difficult news.  One of the first things a newly diagnosed tumor/cancer patient loses is confidence.  To make up for that loss, we figured out that Attitude = Confidence.  More importantly, we learned that an individual's confidence can be strengthened though UNITY.  We decided a Charity Kickball Tournament would be a fun way to support newly diagnosed patients.  We will be hosting this event at Liberty Station in San Diego, CA on 5-19-12 from 8:30AM-4PM.   Registration is at 8:30.  Games start at 9:30 with round robin play to determine seeding. Championship bracket play begins after lunch.  This will be the inaugural event, so we need your support to ensure it's success. 

Please consider a tax-deductible donation in order to support our efforts to assist everyone affected by a new tumor/cancer diagnosis. FOR MORE DETAILS ON HOW TO SUPPORT THE MKF KICKBALL TOURNAMENT, CLICK HERE!

ANNOUNCEMENT: ++All teams will break for lunch between 12:30-1:30PM. Our featured food truck My Urban Eats will be stationed in the parking lot from between 11:30-1:30PM to serve hungry players and participants. ++Urban Eats is a community oriented Gourmet Food Truck focused on "Fresh Affordable Fare". Urban Eats delivers honest food at a good value, utilizing local ingredients and enterprising healthy consumption.

If you can’t make a donation at this point, help us reach our goal by sharing this page on Facebook and Twitter!  Please send a personal e-mail sharing this page to the friends who maybe be interested in supporting our cause. Thanks so much for your generosity! About mAss Kickers Foundation mAss Kickers Foundation takes pride in providing tumor/cancer patients & their loved ones with a "puglistic" attitude to fight this intimidating diagnosis! Together, we can build a strong support group and defeat these horrible diseases. We call it "Tumor/Cancer Thrivership with Attitude."