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Local Nonprofit Advances Federal Efforts to Define and Improve Survivorship for Childhood Cancer

FOR IMMEDIATE RELEASE
July 14, 2020
Contact: Karen Revels, Executive Director
Email: Karen.Revels@cannonballkidscancer.org
Website: www.cannonballkidscancer.org
Facebook: @cannonballingcancer

LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO DEFINE AND IMPROVE SURVIVORSHIP FOR CHILDHOOD CANCER

ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer Foundation (CKc), announced today that Report Language accompanying the House of Representatives FY 2021 Labor, HHS, and Education Appropriations Bill – originally drafted by the organization – was included in the House Appropriations bill which passed July 13. 2020 by a 30 to 22 vote. This accomplishment would not have been possible without the support and leadership of Congresswoman Stephanie Murphy.

The Report Language directs the National Cancer Institute (NCI) to convene childhood cancer researchers and advocates to determine the most appropriate survivorship metric including data on survival and mortality due to late effects of cancer and its treatments. Current metrics used to determine the mortality and survival statistics for childhood cancers do not fully capture the long-term health issues or death rate related to these diseases.

“Right now a child or adult that lives five years from the date of diagnosis, whether they are rid of cancer or not, is considered a survivor,” said Executive Director, Karen Revels. “If this is the only way we measure survivorship, we’re not considering the long-term impact of the disease or its treatment on children. This task force will establish metrics that can be used to paint a more detailed picture of survivorship so we can invest in life-saving research.”

“For too long, the medical community has imposed an adult metric of survivorship on children with cancer,” said Michael Wiggins, CKc board chair and father to Cannon Wiggins, who was diagnosed with neuroblastoma at 20 months old. “Five children die each day from either cancer or its treatment in the U.S., many of them after years spent battling their disease. It is an injustice to their families to call these kids ‘survivors’ simply because five years has passed since their diagnosis. This inadequate metric has thwarted efforts to find better treatments for kids and to ultimately finding cures. This report language is a step toward finding child-specifc approaches to treating pediatric cancer, and CKc is proud to partner with Congresswoman Murphy on this affect this change.”

Pediatric cancer remains the number one killer by disease of children in the United States. Forty-three children are diagnosed with cancer and every day at least seven children will die from cancer or the side-effects of the existing treatments. As many as 95% of childhood cancer “survivors” are likely to experience at least one late effect of treatment, with a third suffering life-threatening and chronic side effects and another third suffering moderate to severe health problems. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; for some forms of childhood cancers, the survival rate is still 0%.

The recent outbreak of coronavirus has compounded challenges facing children with cancer by limiting or eliminating the necessary travel associated with treatment. Clinical trials funded by Cannonball Kids’ cancer Foundation are currently coming back online, but the delay in treatment is predicted to impact survivorship.

CKc is transforming this landscape by funding innovative, first-of-its-kind research and educating the public on the realities of pediatric cancer, both the rate of survivorship for various cancers and the impact of pediatric cancer treatments on survivors.

About Cannonball Kids’ cancer Foundation:
Cannonball Kids’ cancer Foundation’s mission is to fund innovative and accessible research for children fighting cancer to provide better treatments and quality of life, and to educate for change. Their rigorous, relationship-based, invite-only grants process ensures that 92% of CKc-funded trials are first-of-their-kind in the US. To date, CKc has awarded $2.4 million funding 24 research grants creating 593 options for treatment for children in 25 states, DC, Canada, Scotland, and Switzerland.

[EDITOR’S NOTE: The “c” in cancer in the name Cannonball Kids’ cancer Foundation is intentionally lowercase to give the word “cancer” an inferior status.]

Why I Must Be An Advocate for Change and Education

I had the pleasure of representing Cannonball Kids’ cancer (CKc) on Saturday, September 15th, at the first-ever Golden Warrior Festival in Apopka, Florida. This wonderful event was created to raise awareness of childhood cancer, and to beautifully recognize the brave warriors currently battling various childhood cancers in their community.

Day after day, these brave children face things that no child should ever have to know. They routinely undergo treatment that is unfortunately not able to be tailored to their specific illness, and they face the harsh side effects of medications designed to eradicate cancer in an adult many times their size. As I watched these extraordinary children experience each activity that was planned for them, they were so grateful, and so full of joy despite all they continue to face. It was truly such a blessing to witness them be able to simply be children, to see them smile for photos with their favorite superhero or Disney princess, to have their face painted, to enjoy cotton candy or a snow cone, and truly enjoy time spent with their families – I am absolutely in awe of these amazing children and the love and support of their families.

The coming together of this community to provide education on childhood cancer, and to rally around these amazing warriors was truly something to witness. In one afternoon, hundreds of eyes were instantly opened to the harsh realities of childhood cancer, and the dire need for change. All in attendance were able to see firsthand that that most unfortunately, childhood cancer is not rare. It does not pick and choose, it does not discriminate, and it continues to deliver devastating diagnoses on a daily basis. It takes events like this, foundations like CKc, and people who are driven to change the status quo, to make a difference. Being able to share CKc’s mission and accomplishments with members of this community, specifically the goal to create options together, when no more options are available, was incredible.  

This event had such personal meaning to me, as our family was not given the option to fight cancer. After our son Maxwell passed, we learned that he silently battled neuroblastoma in the three months we were blessed to share with him. There is no doubt in my mind that if we were blessed to have Maxwell with us much longer than we were, we would have fought as hard as we possibly could for him to beat this horrible disease.

While we truly feel in our heart that there is no blame, often hindsight is 20/20, and we can now look back and see that Maxwell exhibited some symptoms that would indicate the presence of neuroblastoma. It is understandable that physicians often times avoid immediately linking these symptoms to a possible cancer, because it would cause panic to the family and oftentimes there is no cause for concern. In our case, Maxwell had a protruding stomach – it was almost barrel-like. It was never identified as a potential issue; instead we were praised for our evident success in his feeding. Babies do not have developed abdominal muscles, so a large amount of babies do have large bellies. Maxwell also would sweat profusely. When we pointed this out, our concern was dissuaded, we were thankful when the concern was simplified to explain that sometimes babies just sweat, and it does not mean that there is an underlying issue. Only in hindsight can we identify the need for education on the telltale symptoms of neuroblastoma – and, just like any other disease, it is always better to be safe in ruling out this disease than not, as we will forever wonder what may have been if we were able to identify it, and fight, in an effort to save Maxwell’s life. Instead what started as a high fever weeks later led to an emergency room visit and discharge with a diagnosis of a ‘virus’ only to lose our son less than 48 hours later. Our family is forever changed and living daily with the devastating reality that our son is with God, instead of in our arms.

The never-ceasing love of a Mother for their child makes all things possible, and was what gave me the strength to represent CKc for this event. My heart went out to each warrior family that I had the privilege to meet, and as they shared their child’s stories with me, I was able to share Maxwell’s story with them, and explain how much CKc has come to mean to me. Our lives have been forever changed because of pediatric cancer, and now the fight is mine to continue for my son. Maxwell is my “why” – what drives me to volunteer for this extraordinary organization. I must be his voice; I must be an advocate for change and education. I know that I have found the perfect place in CKc to do these things and so, so much more. The Golden Warrior Festival was a huge success, and CKc was recognized for its help making such a wonderful event a reality. The positive feedback we received, the sincere interest in what we do, the individuals and families asking what they can do to join the fight, and the pride that I felt representing CKc for this event, was immeasurable. It truly was an experience that I will never forget. I did it – and you absolutely can, too!

CKc Visits Penn State Children’s

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.

CKc Funded Immunotherapy Trial with Dr. Theodore Johnson

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.

2017 CKc Quarterly Newsletter

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!

2017 Gold Gala Event Sponsor Recognition

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

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.

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.