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Penn State Research Trip

On June 4, CKc chairman Michael Wiggins and board members Bruce Parker and John McCarroll traveled to Hershey, PA, to visit and tour the Penn State cancer Institute at Hershey Medical Center and Penn State Children’s Hospital and discuss opportunities for funded research.

CKc Board Chairman Michael Wiggins with (L to R) Dr. Jeff Peters, Bruce Parker, John McCarroll and CKc supporter Lynne Umbenhauer.

Our CKc board members were hosted by Vicki Deitzler, Corporate and Foundation Relations Director, and Dr. Jeff Peters, Deputy Director of the Penn State cancer Institute, who treated our team to tours of research labs, medical school facilities, the pediatric cancer clinic and the Hematology/Oncology floor at the Children’s Hospital.

The trip highlight was meeting with Dr. Barbara Miller, Division Chief of Pediatric Oncology and well known pediatric cancer researcher; Dr. Valerie Brown, Clinical Director of Penn State’s outstanding experimental therapeutics program for kids with cancer; Dr Lisa MacGregor, Chief of Clinical Affairs; and Dr. Jeffrey Neighbors, Penn State Department of Pharmacology’s Experimental therapies researcher.

Our board had a productive meeting with these researchers and expressed interest In three primary areas: a sarcoma-based clinical trial; a trial that could focus on teenagers or late-diagnosed children; and our continuing interest in finding and funding young investigators and innovative research.

Penn State Children’s Hospital and its Division of Hematology/Oncology is primarily funded by the Four Diamonds Foundation which in turn is almost entirely funded by Penn State’s famous THON marathon dance-a-thons dedicated to kids with cancer, their families and funding research.

Penn State provides care to approximately 500 pediatric cancer patients per year—100 that are newly diagnosed and 400 in continuing care, clinical trials or in periodic clinic.

The Penn State Children’s Hospital is recognized as one of the top 50 hospitals in the nation for pediatric cancer care by USNews and World Report’s 2017-18 rankings. We look forward to growing this relationship and pursuing research opportunities with their talented team.

At CKc, we believe Research Is The Key!

This video, provided by ecancer.org, shows one of our funded researchers, Dr. Theodore Johnson, discussing the progress of an immunotherapy trial which was funded by CKc’s very first research grant!

We are so proud of the work Dr. Johnson and his team are doing every day to make a difference, especially for children suffering from cancer types that are fatal upon diagnosis.

Please watch and see why we believe!

 

#NoMoreOptions

#NoMoreOptions. No more hope. No more treatments. No more time.

No parent or family member wants to hear those three words. No More Options. No child deserves to die. No child deserves to be given up on because there is nothing more that can be done to save their life.

However, the reality of childhood cancer tells us otherwise. At least 250 children around the world die from cancer every day. These 250 families know the devastating reality of hearing #NoMoreOptions.

We believe that together we can change this reality. Funding pediatric cancer research isn’t just a nice thing to do… it is critically necessary to save the lives of children who need us to fight for them. We can’t fund research without your support. Research Is The Key.

The pain, the guilt, the suffering, the sadness that infiltrates the lives of the moms, dads, brothers, sisters, grandparents and all of those who have loved a child who has died from cancer is real and crippling. A few courageous families have allowed us to take a personal look into their pain. A pain experienced exponentially by those who were touched by one of the 90,000 children lost to cancer each year worldwide.

This September, we hope you take a few minutes to watch these videos and educate yourself and others about the critical need for funding pediatric cancer research. We can make a difference. Please join us in putting an end to #NoMoreOptions.

Second Annual Gold Gala Raises $300,000 To Fund Three New Pediatric Cancer Trials

Due to the incredible support of our CKc Community, our second annual Gold Gala, held on April 1st, raised $300,000 for pediatric cancer research. The money will go towards funding three new innovative pediatric cancer trials. This year’s gala, our foundation’s premiere fundraising event of the year, sold out with 300 attendees and doubled the amount raised from the first gala held in 2016, which raised $150,000. The three new trials will each receive a grant award of $100,000, with two trials receiving their first installment within weeks of the gala.

“I am blown away by the support our foundation has received. To raise $300,000 from only our second gala is a huge accomplishment. However, I am even more proud knowing the money is not sitting in our bank account and that, within the next few weeks, it is going directly to fund potentially life-saving research for children’s cancer,” said Melissa Wiggins, co-founder and executive director of Cannonball Kids’ cancer. “As our motto states, Research Is The Key!”

The three grant awards are:

– A $100,000 grant to Dr. Gregory Friedman at University of Alabama-Birmingham (UAB) to help fund the expansion of a first-of-its-kind virus immunotherapy trial aimed at saving lives and lessening side effects for children fighting brain cancer. The grant was awarded in honor of Julia Cox, from St. Petersburg, Fla., who died in March 2017 at the age of three from neuroblastoma that had spread to her brain and wasn’t treatable.

– A $100,000 grant to be named the Nolan King Research Grant. During the CKc Gold Gala, the CKc leadership team heard the devastating news of the passing of Nolan King, of Orlando, Fla., at just three years old. The team learned there was no trial available for Nolan, who was fighting relapsed hepatoblastoma, and decided the night of the gala to fund a trial in Nolan’s name for the first-ever trial for relapsed/refractory hepatoblastoma. CKc is currently reviewing an application and meeting with a team in Texas for this trial and hopes to have an announcement soon.

– A $100,000 grant to Dr. David Munn and Dr. Theodore Johnson of Augusta University, Georgia Cancer Center, to expand the first trial CKc funded in 2015, due to the success of the trial thus far. The immunotherapy phase-one clinical trial was originally focused on pediatric brain cancers. The money from CKc will allow the same immunotherapy science to now be used in treating other types of pediatric cancers.


New CKc Board of Directors

On January 27th, CKc’s new Board of Directors met for the first time. We could not be more proud and excited to introduce the new board to you! Our 12 amazing professionals come from five states and two countries. The depth and variety of their industry expertise is immense and we know this board is as passionate as we are to grow CKc. We look forward to working with our new board members during their three-year appointment.


CKc Awards $100,000 Grant for Trial to Treat Deadly Pediatric Cancer with No Long-Term Survivors

In January, we awarded a $100,000 grant to fund a clinical trial for DIPG (Diffuse Intrinsic Pontine Glioma), a deadly pediatric cancer with zero long-term survivors. The trial is the first-of-its-kind in the U.S. and will be led by Dr. Sabine Mueller at the Benioff Children’s Hospital, University of California, San Francisco. Over the next two years, up to 18 children on the trial will receive the potentially life-changing treatment for DIPG. This trial has a promising outlook for treatment of DIPG, and could impact the drug delivery system for other types of brain cancer as well, saving more children’s lives. The grant was awarded in honor of Gabriella Miller of Washington D.C., who would have turned 14 this month. Gabriella passed away in 2013 at the age of nine from DIPG, just 11½ months after diagnosis.


First-Ever CKc Youth Ambassador: Alex Hurd

Congratulations to Alex Hurd, CKc’s first-ever Youth Ambassador. Alex, of Greenville, South Carolina and a senior at Westminster Schools of Augusta, is inspired and dedicated to helping educate others about the need for increased pediatric cancer research funding and we are honored to reward this young lady for her efforts.

The CKc Youth Advocate recognition program supports an important pillar of CKc’s mission – to educate for change. The program also helps inspire the next generation of doctors, scientists and non-profit leaders who can continue to fight for more funding, innovative research and better treatments for children fighting cancer.

Throughout her high school career, Alex has written essays, given speeches and entered contests to educate the community on pediatric cancer issues. She has shadowed an occupational therapist and volunteered at a research lab in Atlanta. She will be attending the University of Alabama this fall and plans to pursue occupational therapy school. She wants to work with children surviving pediatric cancer.


CKc Community Corner

The Hi5 Bible Study in Ponte Vedra, Florida, did us proud at CKc by holding a CKc Card Club event. The group, around 20 sixth grade girls, were devastated by the loss of one of their friends in her battle to cancer just the week before their gathering. Expressing interest in doing something to honor her memory, one of their leaders, Cari Earle, suggested a CKc card club.

“We encourage them to think of others and make a difference. They chose to make cards for kids with cancer,” said Cari.

After a devotion and some sweet treats, the girls decorated their cards. Along with their cards, they sent in a $100 donation to CKc.

Way to go, Hi5 Bible Study! We and, more importantly the kids that received your cards, are so grateful for your thoughtfulness and support.

CycleBar Spinning Fundraiser

A big thank you to CYCLEBAR in Winter Park, FL, for hosting a super fun, high-energy fundraiser for CKc! Thirty-six CKc supporters came out to cycle, sweat, laugh and, most importantly, raise money to help us fund pediatric cancer research! This one class of riders raised $900 for CKc! Thank you, again, to Winter Park CycleBar and everyone who came out to support us. We can’t wait for the next one!


Thank you for reading our May newsletter!

Sponsorships are rolling in for our 2nd Annual Gold Gala on April 1st! We would love to give recognition to the sponsors who have committed to helping us raise funds to eradicate pediatric cancer! We can’t wait for April 1st! If you have not yet purchased your tickets, please visit our event web site to purchase your tickets online today:

https://cannonballkidscancer.ejoinme.org/goldgala

Premium Sponsors: 

EVOK Advertising Agency – https://www.evokad.com

Hackers for Hope – http://hackersforhope.org/index.html

Platinum Sponsors:

Women’s Care of FL – http://www.womenscarefl.com/find-a-care-group/central-florida-care-groups/ob-gyn-specialists/about-us

Processing Point, Ic. – http://processingpoint.com

McDonald Toole Wiggins, PA – http://www.mtwlegal.com

GEO-MED, LLC – http://geomedsdvo.com

Orlando Freightliner – http://www.orlandofreightliner.com

Gold Sponsors:

ABC Bus Companies – http://www.abc-companies.com

Silver Sponsors:

XL Soccer World Orlando – http://www.xlsoccerworldorlando.com

Xenia Hotels & Resorts – http://www.xeniareit.com

Bronze Sponsors: 

Zero Chaos – http://www.zerochaos.com

Bowen, Miclette & Britt Insurance – https://www.bmbinc.com

Travel Tabs – http://traveltab.com

Michael and Martha Brown

Pewter Sponsors:

Elan Group – http://www.elan-group.com

Pentair Aquatic Systems – http://pentairaes.com

Hale, Hale & Jacobson – http://hhjlegal.com

Orange County Glass – http://www.orangecountyglassorlando.com

Liz McCausland, PA – http://www.lizlawfirm.com

Keiron Partners – http://www.keironpartners.com

Christopher Scott D’Angelo

Irwin Fritchie Urquhart & Moore LLC – http://www.irwinllc.com

Community Sponsors –

Ponall Law – http://www.ponalllaw.com

Littler Mendelson – https://www.littler.com

Skip McCowan

 

 

 

 

Mumma Bear Blog: Progress and Change

It’s been a minute since I blogged. Frankly, and you all know I like to talk frankly, the new position of Executive Director and creating a new Board to support us has been very time consuming. I am coming up for air… but not for long. 🙂 I have some 15 out-of-state visits on the calendar this year alone. CKc is making waves. Not to brag on Michael and I, but truly to brag on our whole team. Our team is making waves. Our board, volunteers and our team. Little by little things are changing, and we won’t stop.

What change and how?

Michael and I were invited by George Bodenheimer, the former CEO and President of ESPN, to speak at an event last night in Naples, FL, for the V Foundation for Cancer Research. The foundation was founded in 1993 by ESPN and legendary basketball coach Jim Valvano with one goal in mind: to achieve victory over cancer. Michael and I often take turns or tag team speaking engagements, but last night my sports-enthusiast husband stood tall alone, and spoke so perfectly. If you have not heard him speak before, his passion runs through his veins and the room was silent hanging on his every word.

After his speech, at least 20 people approached us saying our story moved them and that they NEVER KNEW the facts about pediatric cancer. Our promise at CKc is that we will not stop until everyone knows the TRUE facts of pediatric cancer and the horror it is. The underfunding! The adult therapies used on kids! The list is endless. It proves to Michael and I that CKc has much work to do to educate for change. Educating for change has been at the core of our mission since before CKc existed and we were just two parents talking about how awful our son was doing. It remains at the core today, and will continue do so, until everyone is educated… until there is change.

To further illustrate the encouragement we received for educating about pediatric cancer, George had asked us to bring to the event some copies of our book, “Thankful For The Fight”, and after Michael spoke, we had to go back to the car to get more books because we gave them all out! It really was so special to see people want to know more about pediatric cancer. It is fire in my belly!

The V Foundation is possibly the most well-known, adult cancer research foundation known in the U.S. A board filled with celebs and making tens of millions of dollars every single year. Thanks to George, Dick Vitale and Kristen and Buster Posey, pediatric cancer has become a huge priority to the foundation. So much so that the V Foundation just started an entire grant just for pediatric cancer called the John Saunders Research Grant for Pediatrics. How amazeballs is this? Plus, Cannon has been invited to Dick Vitale’s event in May where he will stand proud with some other warriors and raise money for pediatric cancer research!

This, as many of you know, is not the first time, per our mission to educate for change, that a primarily adult-based cancer research foundation has looked to fund more pediatric cancer research in light of being educated about the lack of funding and archaic treatments.

Please know my husband spoke about his father who had fought lung cancer and has now passed, as well as being a father to a son who has battled cancer. This is NOT about saying kids are more important than adults… this is about saying they are AT LEAST EQUAL to adults! So, let’s rethink how money for cancer research is distributed and let’s make kids a priority, because without funding and new treatments, these kids are dying. Seven children a day in the U.S.! Seven are being buried today! That is NOT okay! Cancer is the number ONE killer of children by disease! Let’s change that!

The V Foundation wants to discuss partnering on a pediatric cancer research project with CKc and we are excited to talk that through along with our friends Buster and Kristen Posey, who are huge supporters of the V Foundation.

Please, please, please buy your tickets for our CKc Gold Gala on April 1st in Orlando. Bagpipers! A butterfly release! Whisky and cigars for the men and the women – I don’t mind the odd cigar myself! Fire pits! Lakeside venue! I promise it will be incredible! This year our REAL founder Master Cannonball Wiggins will be attending for a short period to show off his kilt! You’re welcome! 😉

 

Thank you for an amazing year!

This is Michael. As we approach the close of 2016, there is so much to look back upon and be thankful. Cannonball Kids’ cancer Foundation funded, thanks to many of you who follow this page, four clinical trials with researchers in Georgia, Wisconsin and Michigan. In addition, we have been hard at work at the end of this year to raise $100,000 to fund a fifth trial in California at the beginning of 2017. We need your help to accomplish this goal. Please consider making an end of year donation to help give us the push we need to reach $100,000 and to help us save lives.

The researchers heading our trials are engaging other pediatric oncologists around the world to help them enroll children who have most regrettably been given no other options for continued treatment. And, so far, at least 33 children have been enrolled in these trials and someday the results may lead to better and more effective treatment for cancers found in children and quite possibly a cure.

We can’t do what we want to do for “our kids” with cancer without you. I have said this many times, but it bears repeating here at this time of year: since Cannon was diagnosed and Melissa and I received an education of how poorly children with cancer are treated by ineffective and antiquated treatments, I never go a day without thinking about the parents each day that will hear an oncologist tell them that their child has cancer, and worse, the parents that have woken and dressed that morning to go to the funeral and burial of their child devastatingly lost to cancer.

Cancer in children is wrong. It is unjust. It is unnecessary. CKc intends to do something about it and to make change through research. Funding innovative research. If you are considering making a charitable donation in these last days of 2016, we would be honored if you would consider CKc. And, gifts of appreciated stock, bonds or mutual funds are a great way to make a tax deductible donation because you will get a charitable deduction for the full market value of the stock or bond and avoid paying capital gains on the increase in the value of the securities.

Thank you all, again, for what CKc has become. Next year promises bigger and better and, most importantly, additional funding of more clinical trials in our quest to find better and specific treatments for children with cancer and to ultimately achieve the day when cancer does not exist in children.

We can do it, and we intend to.

Thank You.

Please take a few minutes to watch this fantastic video about the difference Kristen and Buster Posey are making in the world of pediatric cancer. Michael, Melissa and Cannon had the privilege of meeting the Poseys this past September in San Francisco. This video features some footage of their time together and the joy Cannon experienced at the ballpark. Priceless!! Cannonball Kids’ cancer thanks Buster and Kristen for joining the fight against pediatric cancer and helping to create awareness about the number ONE killer of children by disease. We are honored to know you and to fight along with you.

https://www.facebook.com/Giants/videos/10154014483701828/

How do you tell a child you love they are going to die? Seven children every day die from pediatric cancer, the number one killer by disease in children. Unacceptable. Cannonball Kids’ cancer exists to fund research that gives hope and saves lives for the 50,000 children in the U.S. who are fighting to live. Kids like Coulter. Coulter is alive because of donations from people just like you. Together we funded a trial that has given Coulter a chance to live. We believe Research Is The Key and you hold that key in your hands! Please help us make possible the gift of hope for 15 more children by the end of this year. Together, we will unlock a cure!

Join the #GivingTuesday movement and help save lives today.

Thank you,

Melissa Wiggins

Executive Director

Cannonball Kids’ cancer Foundation

CANNONBALL KIDS' CANCER FOUNDATION,
POST OFFICE BOX 547797
ORLANDO, FL 32854
(321) 325-5392
INFO@CANNONBALLKIDSCANCER.ORG

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CANNONBALL KIDS' CANCER FOUNDATION IS A 501(c)(3) NON-PROFIT COMMUNITY SERVICE ORGANIZATION. CANNONBALL KIDS' CANCER FOUNDATION'S REGISTRATION NUMBER IS CH41586. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, 1-800-435-7352 WITHIN THE STATE OF FLORIDA OR BY VISITING www.800helpfla.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.