3 Ways to Fundraise for Project Open DIPG This Summer

After braving deserts, mountains, forests and even snow, our fearless Four Pennies hiker has crossed the finish line! Congratulations, Eric, on completing your trek of the Pacific Crest Trail from Mexico to Canada!

Although Eric’s journey is finished, the Pediatric Brain Tumor Foundation, Swifty Foundation and Dragon Master Foundation will continue to raise funds for Project Open DIPG throughout the summer. And you can help!

Our campaign goal of $185,000 is aggressive, but it has to be if we want to cure the deadliest childhood cancer. 

You can make lifesaving research possible by fundraising online or in person this summer with the Four Pennies partner of your choice.

The following guide offers ideas and tips to help you raise money as part of Four Pennies, with 100% of all proceeds going towards Project Open DIPG, the first translational, multi-institutional study for Diffuse Intrinsic Pontine Glioma. Not only is it the largest research project ever done on this aggressive, treatment-defying brain cancer, Project Open DIPG also serves as a model for research on all pediatric brain tumors.

Here are three ways to get involved:

Host a Facebook fundraiser.

It’s easy to rally friends and family through Facebook fundraising. Plus, when you select the Pediatric Brain Tumor Foundation, Swifty Foundation or Dragon Master Foundation as your nonprofit of choice, Facebook’s donation processing fees are waived.

1. Set up your fundraiser. If this is your first time fundraising on Facebook, their quick guide will help. Select the nonprofit you’re raising funds for (Pediatric Brain Tumor Foundation, Swifty Foundation or Dragon Master Foundation) and include “Four Pennies Fundraiser” in your fundraiser’s title so that it can be counted towards this initiative.

2. Customize your fundraiser’s description and cover image. The following text can be used to show you’re part of the Four Pennies effort.

I’m raising funds to give children with brain cancer the fighting chance they so desperately need.

The National Cancer Institute, the largest source of cancer research funding, currently spends only four cents of every research dollar on pediatric cancer, with an even smaller portion dedicated to pediatric brain tumors.

Your donation will help the pediatric brain tumor community do more to find a cure. 100% of this fundraiser’s proceeds will be invested by the Pediatric Brain Tumor Foundation, Swifty Foundation and Dragon Master Foundation in Project Open DIPG, a first-of-its-kind, collaborative research project.

Although medical advances in the past 40 years have improved survival rates for many types of childhood cancer, diffuse intrinsic pontine gliomas (DIPG) are not one of them. These highly aggressive brain tumors defy treatment and are always fatal. The research you’re funding is not only the largest research project undertaken for DIPG, it will also serve as a model for research on all pediatric brain tumors.

Whether you donate $5 or $500, every cent helps. Thank you for your support.

3. Make it personal. You’re asking for money for a good reason – to save children’s lives. Although the template text we’ve provided can help get you started, we recommend sharing why this cause matters to you and your family.

4. Spread the word. After you launch your fundraiser, invite your Facebook friends, email contacts and other social media contacts to donate. And don’t forget to post reminders – it takes an average of three asks to get a donation.

5. Show a donation’s impact. Every cent counts in the fight against childhood brain tumors. Click here for information you can share about the research project you’re funding.

Collect change in your community.

Take your fundraising offline by setting up a Four Pennies’ change drive at work, church or in your neighborhood. You could even partner up with a local business to collect change in their store.

At the end of your change drive, submit your donation online or contact the Four Pennies nonprofit of your choice to send in your offline donation and write “Four Pennies” in the check’s subject line to ensure it is counted towards this initiative.

Pediatric Brain Tumor Foundation: Call 800-253-6530 to make your gift by phone or mail a check or money order in U.S. funds to Pediatric Brain Tumor Foundation, Attn: Four Pennies, 302 Ridgefield Ct., Asheville, NC 28806. Email donations@curethekids.org with questions.

Swifty Foundation: Mail your donation to Swifty Foundation, Attn: Four Pennies, 3916 Sarazen Ct., Woodridge, IL 60517.

Dragon Master Foundation: Mail your donation to Dragon Master Foundation, Attn: Four Pennies, 4120 E. 61st Street North Kechi, KS 67067.

Organize an event.

As the summer heats up, everyone’s looking for things to do with their free time. Give your kids, family and friends an opportunity to give back while having fun.

Check out this article by Classy’s Ellie Burke for 25 summer fundraising activities — our favorites include hosting a pool party or summer field day. Or organize a mini-summer hike in your area. Don’t worry – you don’t need to hike 4.6 million steps like Eric! 😊

Together, we can change the outcome for children with brain tumors. Thank you for joining us in funding this critical research effort!

Change the outcome for children like Keris

In 2013, four-year-old Keris Nicole Bembry started experiencing headaches in the back of her head. After being misdiagnosed a few times, her continued headaches and increasingly unsteady balance led her parents to follow their instincts and take Keris to Children’s Healthcare of Atlanta at Scottish Rite Hospital.

The very next day, an MRI revealed the culprit of these symptoms – Diffuse Intrinsic Pontine Glioma (DIPG).

After being told she only had six months left to live, everything changed for Keris’ family. The doctors immediately created a treatment plan, and chemotherapy and radiation quickly became a part of everyday life.

Keris’ joyful smile and passion for life didn’t change with DIPG. On the evening she was diagnosed, Keris’ family found the cutest dress the hospital had to offer and a crown fit for a princess.

Little did Keris know, that single act of boldly wearing her crown would set the tone for the rest of her journey. It was a constant reminder for herself and everyone around her to always keep your head up so your crown doesn’t slip.

That next year came with many obstacles, but Keris was met with an abundance of love and encouragement through it all. She had a royal court of support. With the help of her medical team, parents, siblings, family and friends, Keris received the best care possible for DIPG as she went to Atlanta, Houston and Cincinnati to fight that tumor with all her might. However, the tumor would not shrink enough in size and remained inoperable throughout the treatments.

Determined to live her best life, Keris filled her days with love, laughter and adventure. Keris never stopped going to school, spending time with friends and doing all the things that made her heart smile.

On July 12th, 2015, Keris gained her wings. That was one year, eight months and 12 days after the day she was diagnosed – and gratefully many more than the six months Keris was predicted to have.

Don’t be mistaken and think Keris lost her battle. She won in more ways than one. She led her way through each obstacle with grace. After all, a true princess never lets you see her sweat.

Give now to the Four Pennies initiative and change the outcome for children like Keris. 100% of proceeds from Four Pennies donations will be invested in Project Open DIPG, a groundbreaking research partnership to cure this treatment-defying tumor.

Working Together to Help Get Brain Tumors Off Kids’ Minds

Our daughter Kortney Rose Gillette was a vibrant, happy child who had just celebrated her ninth birthday when I noticed that her eye had crossed. An MRI soon revealed that Kortney had a Diffuse Intrinsic Pontine Glioma (DIPG) tumor in her brainstem. This type of brain tumor is the deadliest for children. DIPG tumors form in the area of the brainstem that controls a child’s breathing, blood pressure, heart rate and other vital functions. Today, there is no effective treatments for these fatal tumors and they cannot be removed through surgery.

While Kortney was in the hospital, the doctors told us that the federal government funds 98 percent of cancer research in the United States. Unfortunately only 4 percent of the National Institute of Health (NIH) annual cancer research budget goes to pediatric cancer research; the rest goes to adult cancer research. Already dealing with a dying child, then hearing this fact, I became compelled to take action. Right after Kortney’s passing we began The Kortney Rose Foundation (KRF) to fund research and raise awareness for pediatric brain tumors. Our Foundation slogan is “Help Get Brain Tumors Off Kids’ Minds”. I honestly don’t like asking for money and  never had plans to be a fundraiser, but life had other plans!

On April 27, 2006, just four months after diagnosis, Kortney succumbed to DIPG. We knew we had to take action to help make a future possible for other children threatened by this disease. Our vision is to create a world where brain tumors are preventable and/or curable so no parent, will hear the words we did, “There is nothing we can do to treat or cure this tumor; it’s about providing Kortney with the best quality of life for the time she has left”.

The median survival time for this tumor is 9 months. Although, DIPG tumor research and finding a cure holds a special place in the KRF’s heart, the foundation funds all types of pediatric brain tumor research and is responsible for nearly $2 million donated to pediatric brain/central nervous system tumor research, and was an original research partner that helped to establish the Children’s Brain Tumor and Tissue Consortium (CBTTC). Our hope was always to fund collaborative “team science” research. Through our partnership with the CBTTC and the relationships and tools they’ve built we are doing just that.

In March 2018, Al Gustafson of the Swifty Foundation, invited The Kortney Rose Foundation to team up with their foundation, Pediatric Brain Tumor Foundation and Dragon Master Foundation to help launch Four Pennies, a collaborative crowdfunding campaign for childhood brain tumor research.  With our interest in collaborating on all fronts, it seemed an apparent next step that the foundations who fund collaborative research would work together in the same manner. KRF was a primary funder, and continues to be a large supporter of the Open DIPG research project, so teaming up with other foundations and Eric was another great opportunity to spread the word and fund research for DIPG and beyond.

 

Working Together

Steve Jobs observed that great things in business are never done by one person, but only by a group of people. If great things are to happen for children’s cancer research, the same truth will apply.

As the steward of a family foundation, the question that arises from my circle of influence is how can we get more foundations not just talking about collaboration, but also actually working together?
One answer is Four Pennies.

Four Pennies is a model for how foundations can raise money together to fund important children’s cancer research. Competition for limited donors is an obstacle for collaboration among foundations. We all want to improve outcomes for kids and at the same time grow the capacity of our own organization. Four Pennies reconciles those competing tensions. Through a creative use of technology that is easily replicable, Four Pennies leverages our collective voice while protecting our private purposes.

Four Pennies is a brand with an important message that can be used by anyone advocating for children’s cancer research. The National Cancer Institute (NCI), the largest source of cancer research funding, invests only four pennies of every available research dollar on children’s cancer research. Why is such a tiny fraction of our public dollars spent on improving cancer outcomes for children?

Although it is certainly true more adults are diagnosed with cancer than children, there are 70 potential life years lost on average when a child dies of cancer compared to 15 potential life years lost for adults. In addition, the span of the years lost for a child is among the most creative and productive of the human journey. When a child dies, society has lost a future scientist, teacher or entrepreneur. The lack of public investment in children’s cancer research is a justice issue that not only impacts families who lose children, but also impacts the common good. How can we imagine that four pennies is enough?

Since 1980, only three drugs have been developed specifically for pediatric cancer. In the past thirty years, survival rates of children diagnosed with brain cancer have pretty much flat lined. We must do better.

Prostate cancer, with an average age at diagnosis of sixty-six, receives more research funding from the NCI than all childhood cancers combined. I don’t want to die from prostate cancer, but if I do, I will have spent over four decades in the workforce, raised a family, been a leader in my community and church and have had the privilege of seven or more decades of life.

The average age a child is diagnosed with cancer is eight. Should the child succumb to the disease, chances are they will not even have completed grade school. Should they be fortunate to survive the cancer, the debilitating life-long side effects of the treatment will compromise their cognition, growth and fertility. Joining the workforce, raising a family and being a leader in the community may forever be out of reach for the child who survives.

Sick children have almost no voice in the public dialogue. They have no influential associations or high paid lobbyists working on behalf of their interests. If great things are to happen, it will require many of us working together to give them a voice.

Four Pennies is a concrete strategy for both raising private dollars and for joining our voices to advocate for more public dollars. Individual and collective fundraising campaigns can include #hike4pennies, #run4pennies, #shave4pennies, #bowl4pennies. The possibilities are endless and the model advances our collective cause while honoring the identity and independence of our own foundations.

Doing great things to advance pediatric cancer research may be out of reach for any one foundation. What is definitely within reach for all of us is creating more ways to work together to increase the length of years and quality of life for children diagnosed with cancer.

Together great things can happen.

Al Gustafson
Swifty Foundation
www.swiftyfoundation.org

 

The Journey Thus Far – April 2018

Hey, everyone! Just wanted to briefly update you all on how the journey has been thus far. I am currently writing from Claremont, CA–the suburb of LA that is home to Pomona College, my alma mater. In the two weeks since starting, I have walked 266 miles from the Mexican border to the mountain town of Big Bear. There I was picked up by two of my former football teammates (thank God for Austin and Smitty) and came back to school for a short visit–and to also have a bit of immunization work done for medical school matriculation in the fall. After wrapping up the evaluation Friday, I will ship right back up into the mountains and head westward along the Angeles crest before turning northbound into the Mojave desert and onward towards the Sierra Nevada mountains.

Up until now, the trail has been serene. The cactus- and chaparral-lined dirt path often zigs and zags across dry desert bluffs under the slow-baking, but not yet oppressively hot, sun. Every so often, a wispy cloud will provide a bit of relief, but the first stretch has been made more enjoyable by the still strongly flowing creeks from the winter’s snowmelt and my umbrella. The walking has been mostly along relatively flat trail with ascents and descents rarely striking too steep a grade. From the get go, the excitement has propelled me to do some bigger mile days than initially planned. This isn’t necessarily a problem, as long as my feet can withstand it. Although I will admit that, after a couple back to back 20+ mile days, a bit of foot pain had me worried for a possible stress fracture or plantar fasciitis. On the plus side, the quickened pace allowed me to take a couple unplanned detours to visit the wonderful communities along the trail (ie: in Julian I got free pie, ice cream, apple cider and beer!).

I have met at least 30 other hikers so far in the early season. They come from all walks of life, from all around the world for that matter, and in all ages and sizes. For some the PCT has been a lifelong dream, for others it serves as an escape from the corporate world, and for the rest, like me, it is simply a privileged opportunity to enjoy the best nature has to offer. I have hiked with a couple other hikers from time to time, but roughly half the nights have been spent camping alone or with someone new because I have yet to find a crew that fits well. Until then, I will keep hiking my own hike! One hiker that I would like to give a shoutout to is Jigsaw. He’s a fellow hiker that camped at the same spot for a couple nights in a row and even shared part of his personal water cache with me in the middle of the desert, which I never got the chance to thank him for. His real first name is Bruce and he comes from Rancho Cucamonga, and even though he is leaving the trail to move to Boise, I hope somehow someway I will get to thank you personally for that act of kindness.

Despite the relaxed nature of this first stretch, it has certainly had its unique challenges. In particular, the stretch from Idyllwild to Big Bear saw a comical array of conditions and hurdles that provided the first test to my hiker will. First, the steep climb out of Idyllwild brought us to the apex of the trail up until this point. With elevation at almost 9,000 feet, it was the first time that we were traversing long stretches of snow. The hiker-infamous Fuller’s Ridge on the north side of Mt. San Jacinto was easy enough with microspikes, but the descent brought us down into the notoriously windy San Gorgonio pass. Unable to set up my tent in the loose gravel and gusting winds, the night was spent cowboy camping (camping under the stars without setting up a tent) tucked under the shelter of a large chaparral bush. The next morning we crossed the desert in temperatures reaching the 90’s. Hiking while it’s that hot is manageable, but given that we were heading back up hill, a bit of strategic navigation from shady spot to shady spot was required. After departing a couple other hikers from the trail magic-filled reprieve under interstate 10, the trail headed through the mesa wind farms and further into the mountainous desert. A short stretch through the Whitewater Preserve was even precluded with a warning of feral longhorn steer and feral pit bulls that had recently charged a hiker and killed a calf, respectively (seriously, google it for more info). Afterwards, in the final push towards Big Bear, the trail followed mission creek for fourteen miles and roughly 5,000 feet of elevation gain.

Overall, the 86 mile stretch accumulated some 13,500 feet of ascent and descent and took me through some of the most remote-feeling land yet.

Part of it was simply the terrain. Having grown up in Illinois, the sheer lack of water and shade I think will be the most foreign landscape that I go through. At times during the slow and arduous climb up the creek, I found myself staring up at the cliffs half expecting a tusken raider to poke its head out from behind the boulders just like in the Star Wars movies I had watched as a kid. The other challenge was the remoteness. Three of the four nights ended up alone, and due to differences in hiking pace, most of the interactions had were only brief greetings with folks that would be soon out of sight. For whatever reason, I simply didn’t see a lot of people over the four days. Now hiking is inherently a physical exercise, but one could say that, especially during such periods of isolation, it serves equally as an exercise of exploration into the mind. It is interesting to see how one reacts to being cut off from our main sources of external stimulation. Given the circumstance of an extended physical challenge yet with nobody else around, I found that I felt mentally drained. The lack of interaction left me to keep my mind preoccupied, devoid of the stimulation that comes from the intellectual ping-pong when you’re around other people. Now typically, I will listen to podcasts (Vox, NPR, NEJM, and The Daily are some of my favs. Any other recommendations?) to provide some food for thought, but it is safe to say that, humans being an inherently social species, I’m looking forward to being around more people along the way.

 

–Eric

Eric’s Personal Statement

On March 18, with a pack weighing no more than 25 lbs, I will embark on a quest to walk from Mexico to Canada—literally. The Pacific Crest Trail runs 2,659 miles along the western spine of mountains, and for me, it often served as a refuge during the stressful trials of being an undergraduate with dreams of reaching medical school. The day hikes and overnight camping trips planted the seed that has blossomed into the coming journey—an aspiration to trek byfoot from the Mexican border, across the deserts of Southern California, through the Sierra Nevada and Cascade mountain ranges, before arriving in Manning Park, Canada. The idea is to combine my passions of hiking and science to raise awareness and funds for pediatric brain cancer research.  And hopefully, by following my progress, the endeavor will teach and excite people about the history, geology and ecology that are preserved by the US National Trails System.

Why pediatric brain cancer research:
My friend’s brother, Michael Gustafson, died from medulloblastoma at the age of 15. Michael’s story hits home to me because, at its fundamental level, it epitomizes the human narrative of disease. When faced with the immanence of his mortality, Mikey decided to fight tooth and nail for what was most important in his life. This is the purpose I see for medicine—not just to alleviate pain, not to simply live longer, but to provide people the quality to pursue life in the manner they deem most meaningful. The limits of the cancer treatments available let Mikey down, but I firmly believe that the journey of a thousand miles—whether to hike the PCT, or to find a cure for pediatric brain cancer—begins with a single step. In this case, the intention is to raise four pennies for each step.

 

Four pennies is significant. Currently the National Cancer Institute, the largest source of funding for cancer research, invests only four pennies of every research dollar on children’s cancer research. The average age an adult is diagnosed with cancer is 66 while the average age of a child is 8.  A child’s death from cancer accounts for 58 more years of life lost. Even when children survive their cancer, more than 75% of them have serious side effects for the remainder of their lives due to the treatments they endured. Given the number of years lost and the quality of years lost, science must do better, but it needs the resources to do so.

 

My goal is to raise four pennies for each of the more than 4.6 million steps it will take me to complete the PCT. The $185,000 raised will fund a clinical trial for children with Diffuse Intrinsic Pontine Glioma, a brain cancer with a median survival rate of 9 months from diagnosis.

Throughout my hike, I will be inviting students from elementary through high school, and any other learners, to virtually companion me and discover the magnificence of the ecosystems that make up the PCT, learning about their geology, ecology and the history of the National Trails System. We will walk along together as I figure out how to survive four months on the trail (did I mention I have never done this before!). Those accompanying me will also learn about the challenges of pediatric brain cancer, and perhaps get involved in raising much needed funds and awareness.