Easy Guide to Instagram & Twitter

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No more brain cancer? That'd be super!

No more brain cancer? That’d be super!

We are well into the Microsoft #ChangeYourWorld contest, and there have been a few questions. First of all, yes, this is a real promotion started by Microsoft. You can learn everything here:

https://www.microsoft.com/en-au/windows/upgradeyourworld/nonprofit-resources.html

Dragon Master Foundation is already international, so we are able to participate where some other foundations can’t. We are very collaborative and we will be web-based, which means ultimately, we will be helping researchers world-wide to collaborate. We will have a vast database that will be accessible to folks everywhere – from Dodge City, Kansas to Florence, Italy. Geographically, we reach further than that, but I think that’s a pretty good visual. ;)

Since this is a global competition, we need everyone’s help. Every single vote helps, and we really need you talking about it every day on your social media channels. Here’s what to do:

• If you don’t already have accounts, set up an Instagram account and a Twitter account. They are both free, but Instagram really only works on mobile devices (smart phones, iPads, etc.)

• Once you have your account set up, post every day – once on Twitter and once on Instagram. Your post needs to say these three things:

1. @dragonmasterfdn

2. #UpgradeYourWorld

3.#vote

If it doesn’t say all of those things, the vote won’t count. It also won’t count if there are typos, so please check your post carefully to make sure those three things are exactly like that.

From the rules, I’m not sure if tagging @dragonmasterfdn will count or if it needs to actually be in the text that you post. So to be safe, please put it in the actual post. (Don’t just tag us in your photo.)

• A sample Twitter post could look like this:

Help us win $500K to find a cure for cancer! Tweet: “I for for You can also post on Instagram!

Remember you only have 144 characters to use on Twitter, so you have to keep it short. You can include a picture if you want to (posts with pics get more views), but if you do that , you will  have fewer characters that you can use. “Characters” are letters, numbers and spaces – so each key stroke counts as a character.

• On Instagram, you can use more than 144 characters, but remember, people are on Instagram to look at the pretty pictures, not to read. So make your picture interesting and keep the words short. The picture does not have to be related to the cause, but it certainly helps!

• Dragon Master Foundation can be found at @dragonmasterfdn on both Twitter and Instagram. Please follow us and you will get more ideas on what to post. You can use our posts to re-post on your own feeds.

• Set a reminder on your phone to make the posts every day. We are all busy, and you may forget if you don’t have a reminder set.

Please ask any questions you have by posting below. We have a lot of folks who are just signing up to Twitter and Instagram in order to help us, so the questions you ask will help others, too!

And thank you so much for getting involved with this! It will help a lot of other people learn about our quest to cure cancer, and hopefully we will walk away with $500,000 to fast-track our database!

White House Champions of Change for Precision Medicine

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The Precision Medicine Champions of Change with Dr. Francis Collins.

The Precision Medicine Champions of Change with NIH Director Francis Collins.

I have always been proud to be an American. I like to think that I’ve done things for the betterment of our country through the years. For more than a decade, I worked with paralyzed veterans, and I like to think I made a positive impact there. It is rare that any of us get any major recognition for our work, but on July 8th, I was invited by the White House to speak about my new passion – cancer research. Along with 8 other Americans, I was recognized for making a positive impact on precision medicine. The award was a great honor, and it was so motivating to be in the room with so many passionate, innovative people!

While the experience is still fresh in my mind, I wanted to share some of it with all of you. As you might imagine, an honor like this was uplifting and also a little intimidating. I mean, the White House! I had been as a visitor, but never as a guest! We had specific times that we were allowed to enter, based on what we were doing that day. I was allowed in early, but the folks with me had times staggered throughout the day that they could enter.

Richard was with two key players in the database effort – Adam Resnick and Jay Storm. I was so glad to have all of them there to keep my thoughts on track. Talking with them is so invigorating! Their clarity of vision and intense desire to help children is so motivating. I wish I could relate their passion to everyone. Being in that environment is like  watching a hot air balloon come to life… Filling and filling until it rises off the ground and soars to its higher purpose. We all have that purpose inside us, and being with others who can help us see our purpose is one of life’s most amazing gifts.

So they were with me in spirit, but I entered the building alone. After a security check, I was in and looking for our meeting room. The Champions gathered waiting for our turn to be filmed for a quick segment on precision medicine. Not sure when that will be available for viewing, but it was a good way to start the day.

After that, we went into round table discussions on various aspects of precision medicine. Richard, Adam, and Jay were all in the building in time to participate in these sessions. There was valuable information shared, but the sessions were too short to really hear from all the participants. There were many people in the room that I wanted to hear more from. I’m hoping that we will have a chance to connect after everyone returns to their normal lives.

We had a quick lunch break but the guys and I had gotten separated. Luckily, that is about the time that Kevin Beezhold arrived. Kevin is one of the people who nominated me for the award so it was great to get to meet him in person. He and I discussed his thoughts on my upcoming panel questions, and it was good to get his perspective.

By this time, we were able to reconnect with Richard, Jay, and Adam. One last pep talk and I was off to meet NIH Director Francis Collins! He was very aware of my personal story and seemed receptive to Dragon Master’s database project. I got the chance to tell him that we would love to work in conjunction with the NIH and he seemed receptive to that idea.

A portion of the afternoon is available on YouTube: http://bit.ly/1fv5nne

The room was filled with passionate people who care deeply about making a positive impact on healthcare and precision medicine. And oddly enough, they seemed to be mostly in agreement on the changes that need to happen:

  • greater sharing of data, especially to new populations of people like patients and their families
  • education of the general public so they will understand their rights when it comes to data
  • special care to include parts of the population that may feel alienated from the process

I’m proud to say that the database we are working on will definitely address the data sharing issues. I hope that as we are building it we can also help people understand their role in how this data can be used. We want to include everyone in the process of collecting and using the data, so I hope that we can be transparent in the process and help everyone feel secure about their choices to share data.

In an effort to help people understand why this is all so important, I’m going to be making some videos about our database and how it can be used. We will be taping some of these videos at WSU on Thursday, July 16th at 10am in the Rhatigan Student Center. I’d love it if you could join us, and ask any questions you may have about Dragon Master Foundation and our database.

7 Ways To Celebrate National Cancer Survivor's Day

Seven Ways To Celebrate “National Cancer Survivor’s Day”

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7 Ways To Celebrate National Cancer Survivor's Day

National Cancer Survivor’s Day is a relatively new day of recognition on my radar, but I think it is really important. It is significant to me because I sometimes need a reminder that there ARE people who are surviving cancer. You see, I do a lot of work these days with the DIPG community – a pediatric brain cancer that claims the lives of nearly every patient. For them, being a survivor means you are alive today. It is the most stark reminder that we should all appreciate each day. Every. Single. Day.

So on this day to honor survivors, I thought I’d touch on some things you can do – every day – to make a difference for those fighting the cancer battle. I really want to focus on the “mundane” things that most of us do every day, so I’m gonna go through my typical day and show you how easy it is to make a difference.

#1 Social Media – When I get up in the morning, I typically check Twitter or Facebook to see what my friends are up to. I like to share their positive messages and I frequently share a message about cancer fundraisers. (Even if you can’t afford to participate in a fundraiser, sharing it on social media is a powerful way to help.)

#2 Pretty Flowers – In the summer, I will typically let the dog out and then wander into the back yard with him for a minute or two. I like to check the progress of the flowers, and that reminds me that National Brain Tumor Society has a bulb fundraiser that lets you have a annual reminder of your gift to their cause.

#3 Recycling – Back inside, I usually grab a quick bite to eat and then shower & get dressed. As I use up containers, I drop them into a small box for recycling. The salon I frequent has signed up to help with recycling, too, so our containers add up pretty fast.

#4 Wearables – What I’m wearing each day will vary, but on “casual” days, it’s almost always some sort of awareness shirt. Dressier days see me wearing a wristband, bracelet, or necklace. On a good day, I can wear all four things!

#5 Online Purchases – Then it’s usually time for the computer. If I need to order anything online, I make sure I check the vendors that use iGive.com or AmazonSmile so I can donate a percentage back to Dragon Master Foundation. My emails have a tagline that points people back to those simple ways they can raise money for charity. I really think everyone should use AmazonSmile. It doesn’t cost the participant anything, and it can add up quickly for the charity.

#6 Social Media – Ok, I know I’m listing this again, but things go by pretty fast on Twitter, so one tweet a day won’t necessarily reach a lot of people. During the day, whenever I end up on social media, I try to add a Tweet for the cause.

#7 Food – At the end of the day, we either make something at home or go out to eat, but either way, I’m careful to pay attention to the brands that support cancer research – especially brain or childhood cancer research. Those are much harder to find that other types, but you can bet we are there when Chili’s supports childhood cancer awareness every year! And our grocery store, Dillon’s, lets us donate a portion of our grocery bill to Dragon Master Foundation each time we shop with our rewards card.

So there you have it. Seven easy things you can do nearly every day to make a difference in the battle against cancer. Maybe if we all make it a daily effort, there will be a few more survivors to celebrate next year when this day rolls around.

Celebrate Life

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My family would tell you that I get a little wrapped up in brain cancer awareness. It’s true. My brain is always thinking about how I can raise more money for Dragon Master Foundation and how I can help people understand why this database is so important. It’s a huge task, and it can be all-consuming. I’m grateful for my family’s support, but I don’t ever want them to feel like they take a back seat.

Today is Austin’s 20th birthday. I no longer get to call her “the teenager”, and she has definitely been taking on the role more and more of a young woman – not just a “kid”. It makes me a little sad – as I’m sure it does her. After all, those carefree days of childhood are to be treasured. I feel like she didn’t get to have a fully free childhood, in part because of cancer. It took David’s life, but it also took Austin’s best friend.

Despite that, she has picked herself up, dusted off the disappointments, and started building the person she wants to be. She is smart and has a sharp sense of humor. She is creative and has a sense of timing and awareness that gives her an insight that most people never develop. She is solid at the core, and I’m so proud that she is beginning to trust herself and her own decisions. I believe that once she settles on her true passion, she will be unstoppable.

In some ways, she will always be that little girl following her brother. But in so many ways, she has had to blaze her own path. Her first steps were timid, but she walks with more confidence every day. It is an honor to be able to celebrate her life today.

People You Need To Meet: #45 Linda Strause

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Randy'sPaddleOut

Friends and family had always been an essential part of the life we shared together for 35 years of marriage. Our days were filled with activity; work, family, and planning travel adventures. We skied with friends every year, we arranged scuba diving trips with family and friends, and we traveled on extended family adventures almost every year since 1985.

“You take your children on adventure travel, but they are so young? What do you do with them in the airplane?” friends would ask. “Put their seat belts on” Randy would answer. This is what made our life so full of laughter and love.

We were having four people for dinner on Saturday, April 5th, 2008. It wasn’t a special dinner but one where Randy and I looked forward to introducing two couples to each other and enjoying not only our friends but also the making of new friends. However, for about a month he hadn’t been feeling well. We had been skiing in Tahoe with wonderful friends but, Randy felt weak so when we returned he went to the doctor. Nothing unusual was found so rest was prescribed and life continued. But that Saturday Randy said “I just don’t feel right.” He showered and off we went to the emergency room. Our “Life’s journey without maps” began.

I believe that a life’s journey without maps is one that has the best chance of leading to unique and lasting discoveries. Rather than an average journey with a defined direction it is rather a journey of “self-discovery.” It is also why our perspective of how life is to be lived changes with the ever changing path. And my perspectives were about to change radically! First, for so long I believed that a “caregiver I am not.” Mine was not a fear of dying but rather a fear that I would be responsible for the total care of someone I loved deeply. Friends, family, and yes even Randy, use to remind me that I wasn’t “Florence Nightingale.”

I recalled with laughter when a friend asked, “have you shot him yet” – referring to the fact that Randy had a cold for a few days. As for me, I am “NEVER” sick. Thus when we received the diagnosis of Glioblastoma Multiforme – better known as GBM and the most deadly, incurable form of brain cancer, all I could think of was that I could not possibly take care of him with the dedication, patience, compassion, and unconditional love that he so deserved. My greatest challenge in this journey would be to overcome this deep seeded fear.

That perspective was based on the experiences I had when I was traveling on a different life journey; a journey of life where future travels were planned, future work discussed, and future dreams of graduations, marriages, grandchildren, and retirement were possibilities. There were no maps for that journey either but we believed in living life to the fullest and striving to achieve our future dreams.

Early in April our life’s journey took a different path, and I suddenly found our two sons, 28 year old Tyler and 22 year old Brendon and I had become Soul Sitters to Randy. This new role gave our sons, our family, and our friends a totally different perspective on life. Without the support and love of our two sons, I know that this life’s journey would have included many “bumps,” “hurdles,” and “ditches” which were avoided as we came together to share with Randy – my husband and Tyler’s and Brendon’s father – the experience that this new journey would take us on. We evolved into Soul Sitting, learning one day and one moment at a time what was needed. We learned to live in the present while letting the next moments unfold.

Our home became open, in a sense that only those would experience Soul Sitting for someone so deeply loved, can ever imagine. One evening, when a friend was bringing over dinner, he politely asked, “How many people are going to be at the house?” I turned to Tyler and asked if he knew. “I just meet and great,” he said with a smile. Dinner came, people came, bread was broken, wine was shared, and we gather together with Randy who was ever so present. Others joined in to Soul Sit Randy and, in their own way perhaps, they were Soul Sitting Tyler, Brendon and me as well. Our life’s journey was shared with others and they each discovered the empowerment and encouragement that came from the experience.

Together we learned that the normal life, where one gets sick or injured and then gets better– “I feel much better today and I can get up and go to work”–was not the journey we were on. Soul Sitters must learn that each moment is measured by how little your loved one has declined from the day before. “Dad is only about 5% worse than he was yesterday, he can still manage to walk down the hall with only a little help.” Randy’s band of Soul Sitters never faltered; in fact it only grew and grew with a passion that to this day fills me with love.

Our wonderful neighbors, including 2 young children – 4 year old Ryan and 2 year old Taylor – were important members of Randy’s circle of friends. As Randy’s health declined and he was eventually forced to remain in a hospital bed, Taylor would come into the house with her mom, give me a hug and say, “I am going upstairs to hold Randy’s hand.” The image of the 2 year old little girl holding Randy’s hand still brings tears to my eyes. Randy’s band of Soul Sitters forever.

I also believed that depending on need, having Randy cared for and even die in a place other than his beautifully and passionately built home was “not a problem.” I explained to the hospice admission nurse that I did not have a deep commitment to having Randy die at home in our bed. Yet, that is exactly what happened. In the final hours, our home again was filled with Soul Sitters and in our bedroom family and friends enjoyed dinner and wine with Randy still present.

As the evening wore on, in-laws and friends drifted downstairs. In the end, Randy was in our bed surrounded in a circle of love. Our oldest son Tyler was on one side, our younger son Brendon nestled below him, each with their girlfriends cuddled closely, and me on the other side with my head, where it always was, deep within his shoulder. Peacefully Randy died, almost 2 years to the day after his diagnosis.

This “circle of love” was repeated at a tribute to his life. Over 200 people joined together at the Powerhouse Park and over 60 people paddled out beyond the surf, at our favorite beach wall – 20th Street in Del Mar – where Randy’s ashes were spread to the sea and to the heavens, his spirit remaining close to our hearts.

While I truly regret that our circumstances led us on this life’s journey – a journey with no signs, no boundaries, no maps– I am honored to have been a Soul Sitter and to have shared the unconditional joy and love achieved during this journey. I discovered that I could do things I never imagined being able to do. I discovered that through the love of family and friends one can move through any fear and overcome one’s greatest challenge.

This journey of self-discovery taught me that I need not be a single Soul Sitter and that banding together with the love of family and friends enabled me to become who I was meant to be, and a different if perhaps not better person because of it. It may not be possible for everyone, but it is wonderful when Soul Sitter is plural – “Soul Sitters.” In ways large and small I have been inspired by family and friends. I have learned the true meaning of friendship and have gained an appreciation of what it means to live life to the fullest, to strive to be our optimal best, to commit to being true to ourselves, and to continue to reach for our dreams. In a sense, this is a journey of self-discovery, one that will never end as long as it is immersed so clearly in the deepest love as this journey has been and continues to be.
As Brendon posted on FaceBook the morning after his father’s death, “When it comes to the end, all that’s important is family and friends.” That says it all and that is how I choose to live my life.

Editor’s Note: This series has been on a bit of a hiatus, but we will at least finish out the 52. It has  changed from its initial purpose, but it has evolved into something powerful for each participant, I believe. I hope that everyone who has a chance to read this series brings away a sense of hope – for themselves, for their loved ones, and for a cure.

Mother’s Day Wish

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As sweet and wonderful as my husband, daughter, bonus daughter, and bonus son are, they can’t give me what I really want for Mother’s Day. If you know me, you’re thinking I’d want David back. Well, sort of. I mean, with all of my heart, I’d love to have him right here beside me, but how can I wish him back from a world so much better than this one? Now that he is there, I know he must stay. So what I’d really wish for is that no other parent would have to prematurely say goodbye their child. I want a cure.

You can look at my son’s death in a few different ways. In the most detailed way, you could say, “he died from GBM so we want to cure that.” Or you could broaden that scope and say “he died from brain cancer so we want to cure that.” He was a teen when he got cancer and that would fall into “childhood cancer” territory, so you could say we should cure that. Or you could look at the big picture and say “he died from cancer, so we want to cure that.”

There have been successful foundations set up with each of those goals. I guess the difference we bring to the equation is that we see the synergy between all those goals. We need to see the minutia in order to see the big picture. But by focusing on just GBM or just childhood cancer, we may miss answers that lie just beyond in brain cancer or cancer in general.

Please understand that I am not faulting the foundations that came before us. They all have served a very important purpose. I believe that we fill a gap between all the other foundations. We want to bring them all together. We want to take data from the individual silos, from the small consortiums, and put it into one massive database. People think that researchers and institutions won’t share. We know that isn’t true. There are consortiums all around the world, and we have already signed on five hospitals to share their data with us.

The missing piece is the data – not the sharing. We need to create high-quality data that is meta tagged for a searchable, graphing database that can be used in real time by researchers in virtually any location. We want to give them access to the data AND the computational power they will need to work with it. In the same way that Facebook can suggest new friends, or Amazon can suggest the next book you should read, computers can help researchers find new leads in the war on cancer.

Instead of wondering why some patients are successful in a clinical trial and some are not, the computer would be able to analyze each patient down to the molecular level to see what the successful patients have in common. They’ll know what the patients have in common who aren’t successful on the trial. These answers mostly elude researchers right now because of the complexity of detail. This type of database will speed research by an incomprehensible amount.

In a span of moments, they could query the database for information that takes months or years to deduce with current systems. Think about it as trying to find information for a report in 1980. You would have to go to the library, dig around for books and periodicals, maybe even travel to a different library to get all the information you need. The internet has put the most mundane information at the touch of our fingers. We just want to do the same for critical cancer research data.

If you want to do something for me and for all the mothers who are mourning their child because of cancer, then please plan to attend this webinar: http://bit.ly/1dLwolc . You will hear people far more eloquent than me discuss this database and what it will mean for cancer research. It will give you hope, and I pray it will give you purpose because we need more people in this fight.

Brain Cancer Awareness Month Needs You!

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DavidWearGray

Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.

I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.

If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!

Anywhere
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness

May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc

Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/

Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on FacebookTwitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive

Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.

Ok, now for a state by state listing of activities you can participate in:

California
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html

May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry

May 30 – Cocktails for a Cause – https://myab.co/events/EC/

Iowa
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/

May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275

May 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&pg=entry

May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham

It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.

A Significant First

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Wilson's happy cookie

You make note of many firsts. Baby’s first steps. First day of school. First job. First anniversary. They are almost always happy occasions. But today I am trying to find a way to  honor a first that is not happy. It’s heartbreaking and yet it means so much that I can not let it go by without acknowledgement.

Yesterday, I found out about a brain cancer warrior that has moved on from this world. His family and friends will have to learn to live without his sweet presence every day. It is a first for me because they have asked that memorial donations be made to Dragon Master Foundation. This is the first time that I’m aware of this happening, and I don’t know what to say. How do you thank someone for such a selfless gift? They’ve wrapped up all their love and lifted it as an offering in honor of Wilson. They believe in us enough to put it out there to the world that they want his life honored through contributions to an effort to save others.

This is such a significant thing to me. I’m humbled. I’m in tears. And I’m so very determined to put an end to cancer. For Wilson. For David. For all the warriors still in this fight. We won’t let you down.

For Auld Lang Syne

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I have an app on my phone called “Time Hop”. It goes back in time to year’s past and pulls out photos from your phone or Facebook to show you a little of your personal history. Today, one of the photos it showed me was of my Facebook statuses from 2010. What struck me was how happy they all were. How thankful. How EARLY in the year. You see, all of the statuses in the picture were from the first eight months of the year. David was diagnosed with cancer in month 9.

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In hindsight, I always wonder if I was thankful enough before cancer entered our world. If I appreciated my kids enough. If I knew how blessed we were in spite of our hardships. Then today I saw this recap of my year before cancer. There’s no doubt that I knew what my blessings were. It wasn’t all sunshine and rainbows, but I reveled in them when they appeared.

What really struck me, though, was how blissfully unaware we were. We had “normal” problems. The kind that you can pull yourself up by your bootstraps and get through. And then, David got an excruciating headache that led to three weeks in ICU and brain surgery. All the while, we believed that we would just pull together as a family and get through it.

But cancer isn’t always like that. Yes, being positive and fighting hard is important. I believe that it can make a huge difference in treatment and survival, but it is no guarantee. Cancer sneaks in unexpectedly and steals away your normal. To me, that is the most alarming thing. There was no warning.

In some ways life is just like that. You never know what’s around that next curve. The end of the year seems like a good time to look back over those curves and smile where you can, and cry when you must. More importantly, it’s time to look ahead to see what you can do to smooth the curves in the coming year, both for yourself and for those around you.

For me, looking ahead means finding innovative ways to fight cancer. I know David is looking down on us urging us forward. I know that he would see each life as precious and worthy of the fight. As we enter 2015, I hope that you will join us to make a positive change in the world of cancer research.