Newest Recipient of a Young Investigator Grant Announced!

Dr. Michael Ortiz from Memorial Sloan Kettering in New York City is CKc’s newest recipient of a Young Investigator grant! Early in his career, as the Chief Fellow at MSKCC, he treated Nolan King, the son of Research Director, Kelly King.

Since Nolan’s passing in April 2017, Kelly and Melissa Wiggins have remained connected with him and visited Dr. Ortiz to discuss his research and career goals, and how CKc could assist him in getting his research into the clinic. Because pediatric cancer researchers must search to find their own funding for clinical trials and research to achieve this type of goal, CKc is dedicated to encouraging bright, eager and committed talent like Dr. Ortiz to stay in the field in spite of its challenges by providing salary coverage.

Encouraging those who show this type of promise is an essential part of changing the status quo for kids battling cancer, and this $100,000 award, payable over three years, will help protect Dr. Ortiz’s time in the lab, and assist him in developing his first clinical trial for high-risk solid tumors including hepatoblastomas, sarcomas, and Wilms tumors. He’s already taking huge steps in this direction by being invited to apply and submitting a clinical trial grant application to CKc in the first grant cycle of 2019!

A strong mentor relationship with a leader in the field is an essential part of early career development, and a requirement for our grant funding. Dr. Ortiz’s mentor, Julia Glade Bender, MD, Vice Chair for Clinical Research at MSKCC, told us this: “After 2 decades in the field of pediatric oncology drug development, it is strikingly apparent that Dr. Ortiz is the ‘real deal.’ He possesses the three most critical elements of success: passion, intellect and tenacity. If provided with support at this critical stage of his development, I am certain he will achieve national recognition and earn his place amongst the rising stars in translational pediatric oncology.”

“This grant would provide me with the support needed to continue my pursuit of novel targeted therapies for high risk pediatric solid tumors … and facilitate my ultimate goal of becoming an independent translational clinician scientist.”
– Michael Ortiz, MD

CKc advances research and education initiatives in DC!

When we told you CKc was growing, we meant quickly! And Team CKc, new staff as well as dedicated volunteers, didn’t let any grass grow under their feet. If cancer doesn’t rest, neither will we!

CKc on the road to DC

First stop: Education on Capitol Hill (go big or go home, right?)

An integral part of CKc’s mission is to educate for change, and that includes Congress! Team CKc met with Greg Gill at the Venable LLP office, our pro bono lobbying firm,  to strategize advocacy for this year. We also met with 11 congressional offices, including six in the senate, and five in the house. The highlight of this trip was that we were able to meet with DC-based staff from every one of our local representatives, including Senators Marco Rubio and Rick Scott, and Representative Val Demings. This also included personally meeting Representative Stephanie Murphy, who’s district houses the CKc office.

All of these offices have pledged their support to help us further some legislation regarding the deadliest cancers, which Team CKc will now continue working on from Orlando.

Next stop: Research at Children’s National Hospital

Team CKc met with four researchers at Children’s National Hospital to learn about their current and future research projects. Two researchers specialized in brain tumors, one solid tumors and one in genomics. CKc carefully vets potential grantees and invites only the most innovative to apply! The group discussed possible grant funding and the CKc grants application process. We are excited about the possibilities at Children’s National Hospital!

Last stop: Collaboration with OpenWater, Arlington, VA

Speaking of the grants process, Team CKc met with staff from OpenWater, the company providing CKc’s new grant application and management software. This software was put into effect in January to help streamline and automate the application, review, and follow-up processes for all research grants. The next step in the growth of CKc, this software ensures we can continue to be good stewards of the investment our donors make in the fight to cure childhood cancers.

Are you exhausted yet? Grab some coffee… we’re just getting started!

Big News: We’re Growing!

This is possibly the easiest post I’ve ever had to write at CKc…

When I stepped in as the Executive Director at CKc, my exact words to the CKc governing board were as follows: “I will do this, but only if you promise I can get back to 100 percent research and education when the time is right.”

Well, my friends, the internal goal I had for myself (Don’t you have those? Goals no one ever knows but you?) was to reach $1 million raised in one calendar year. What I didn’t expect was that this goal would happen in 2018, just 3.5 years after giving our first research grant to Dr. Johnson in summer of 2015. 

If you’re reading this and you know me (like really know me), you know I had my eye on who my predecessor would be from the day I took the role as Executive Director. The timing had to be right, and one day while brainstorming with said person I had an eye on, she said, “I wish it could be me.” I saw my window and darn it, I took it! I responded calmly, trying to keep my cool at the words she had just said. I said, “Are you ready yet?” To which she responded, “Let’s do this!”

You see, for those that don’t know her, she is not only known as a nonprofit guru, she was an Executive Director at the American Cancer Society, a Director of Philanthropy and even taught nonprofit leaders how to be the best they can be. Did I mention she has served on our advisory board since the beginning? And that she was introduced to me by Ashley VanDerMark, not only the person who helped me start CKc, but our ED from day one. This is a full circle moment for sure! 

Without further ado, please meet Karen Revels, the incredible badass that will take CKc to the next level.

Of course, we couldn’t welcome our new Executive Director without having fun in our studio and showing off the entire CKc team

Selfishly, I’m extremely excited to focus 100 percent of my time on research and education again with my sidekick, Kelly King. We have already hit California, Georgia, Florida, Alabama and Scotland for research since the beginning of the year. But so, so, so much bigger than that, I am over the moon that because of this change, this move… more children will survive pediatric cancer and live better lives because We Can Do Better… and we will. 

Here are a few words from Karen. Please join me in giving her an amazing welcome!!!

Greetings friends! 

I feel as if the past 23 years working in the nonprofit sector in Central Florida have been preparing me for this role, and I couldn’t be more excited. I have been in awe of Melissa since the day we first met right after the book Thankful for the Fight was released, and then shortly after meeting with her when she had the wild idea of starting a nonprofit. 

Fast forward to today and I am pinching myself at the thought of coming on board and helping to grow the seeds that have been planted thus far. So much has been accomplished in the four short years since CKc’s inception: families provided with hope; children able to celebrate another birthday, ALL BECAUSE OF EACH OF YOU!  But we can’t stop, there are more lives to save and there is more work to be done.

I am grateful for the opportunity to do this with you, with the wonderful donors and supporters of CKc, those that believe in the mission, believe in Melissa and Michael’s vision and believe the status quo is NOT OK when it comes to children facing cancer. I promise to be a vocal advocate; devoting my time and energy to all that we will continue to do until no family hears the words, “there are NO MORE OPTIONS.”  Again, it is my honor and privilege to work side by side with all the wonderful volunteers and supporters.

Thank you for all you do!

– Karen Revels

Accessibility looks like THIS! 

Three years ago I met Kirsten Sinclair, who is the Director of Fundraising for Glasgow Children’s Hospital Charity. Her work supports The Royal Hospital For Children, which is the largest children’s hospital in Scotland. This week, two sets of families in Scotland will hear the words, “Your child has cancer.” Their nightmare will begin. Kirsten asked me 20 months ago if CKc could help her kick-start a capital campaign for those very children, which would include speaking to 500 women, TV interviews, and newspaper stories. The goal was to raise 1 million pounds with her efforts. 

Today, I met with Kirsten again; and, I got the report that they DID IT!!! They raised a million pounds! Today, she shared what they have done so far with the funds, and what their plans are for the future. Today, I had the honor of meeting a research nurse that has been funded by CKc. Today, I was told they can now offer children 20 different clinical trials! 

It states in CKc’s mission statement that we “fund innovative, ACCESSIBLE research”. What does accessibility actually mean? What does it look like? It looks like providing a research nurse and infrastructure which enabled a drug company from the US to bring an immunotherapy trial to the UK. It looks like training for their team in the US so that kids from Scotland and the rest of the UK don’t need to go there for the immunotherapy trial. Glasgow Children’s is the first group in the UK doing this. BOOM! Accessibility looks like THIS! 

All of this made me so proud to partner with them. It chokes me up thinking about our mission being carried out there, and how that speaks volumes for our commitment to it. Just watching the domino effect of what has happened since this partnership began blows my mind! I am not bragging on ME, but I’m FOR SURE bragging on what CKc donors, volunteers, scientific advisory board, governing board and our team has made possible. 

When CKc began, I said this quote at our first gala: 
”I alone cannot change the world, but I can cast a stone across the water to create many ripples.”
– Mother Teresa. 

Ripples are now waves! I’m so proud to be part of this team, I could jump up and down! I’m so grateful to everyone in the beginning who believed in a crazy Scottish lassy and an American trial lawyer. And now their belief has grown to the cause, the kids, the team, and the mission. And beyond that, the list of believers has grown by leaps and bounds. We are grateful! We are in this to win it and winning means changing the status quo! Period! It means more survivors! It means better survivorship! We can do better for kids battling cancer. And we WILL do better! 

The Story Behind The Photo

Every photo has a story… This one is pretty unique and beautiful and sad and so powerful wrapped into one.

On April 1, 2017, Nolan King died unexpectedly after surgery. Nolan was 3. Nolan is a hepatoblastoma cancer warrior! A true real life hero! Nolan’s parents are photographed above with me and Dr. Elizebeth Beierle of UAB, a CKc funded researcher.

Now let’s backtrack to 2016 when I met the King Family! I met Nolan at Arnold Palmer Children’s Hospital – my Cannonball was having scans and Nolan was being pulled in his wagon by his Dad Tony, he was in chemotherapy treatment and was so sick, BUT what a beautiful smile he had. 

The last time I saw Nolan he and I played soccer with Richard Johnson our creative director at CKc. We laughed and played and I will forever remember Nolan that way!!!! He is my little soccer star! 

When Nolan relapsed Kelly his Mum called me and she said four words I will never ever forget! 

“He CAN’T die Melissa”

I promised Kelly he wouldn’t and that we would find a clinical trial together for relapsed hepatoblastoma and I would reach out to every researcher I knew and get Nolan what he needed. I believed that! That had been my experience with every Mum prior to Kelly! This time would be no different…I thought! 

It is painful to write these words… I failed! I couldn’t find anything… no trials for Nolan. 

On April 1 the night of CKc Gold Gala in Orlando my husband and co-founder Michael Wiggins with permission announced that CKc would fund a clinical trial for hepatoblastoma in Nolan King’s honor. 

Today we got to show the King Family what funding has done in basic research so that we may fund a trial. 

Personally, I made it my mission to keep our promise! Literally, hundreds of hours to get to this photograph and I would do it all over again for that little man I played soccer with just two years ago. 

I couldn’t keep my promise to Kelly but I can to Nolan and his two little brothers whom I love, Carson and Spencer! I promise that someday kids won’t die of hepatoblastoma! That someday soon there will be options for kids like Nolan! 

CKc Makes News with Novel Emmi-Grace Applesauce Trial

CKc co-founder Melissa Wiggins and pediatric cancer advocate Monica Angel were in Tampa, Florida, recently for a #nomoreoptions event. Approximately 50 people attended the small group gathering which focuses on educating others on why advances need to be made in the field of pediatric cancer treatment to not only create more survivors, but to also increase the quality of life for those children. The event also highlighted a CKc-funded trial that involves an innovative way of administering chemotherapy to a child under three years old. The trial is named after Monica’s daughter, Emmi-Grace.

 

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Update on Cannon from CHOP

The FIRST goal is survivorship. That’s the number one priority! But what does survivorship looks like? If you have heard me speak you have probably heard me say these words.

Our priority at CKc is not only creating options together BUT better options together …..

Frankly what we have today is NOT acceptable to me or anyone on Team CKc!

I know this because I live it with my son. My survivor. For a time I felt bad talking about it because how can I ? How can I talk about how unacceptable survivorship is to me when so many only wish to have their survivor with them. I sound UNgrateful. But I am grateful. I have since realized because I’ve spoken to and spent a lot of time with parents who have lost their children to childhood cancer that they want me to work harder for better options. That creating the same options would ONLY make the same results and that we need real innovative change! Changing the status quo is about creating survivors and creating a quality of life for them.

Today Cannon teared up as I put his hearing aids on. He asked me if he had to wear them — a new question since starting first grade. He asked me why he wears them and explained to me he can hear without them. He picked his nails and hunched over with anxiety as I placed them on his ears. Michael and I hugged him and talked him through it as we have done every time before this. Cannon left the room and Michael and I watery eyed and all looked at each other and half smiled – our hearts ache. Cannon is getting older and self conscious. Of late he has asked me why he is smaller than kids his age. Cannon is 20 months older than his twin brothers but they are almost all the same height. I appreciate that it is MY job.. Michael’s job to raise Cannon to be a confident, kind, loving man and we can and will do that, but cancer has added many hardships to Cannon’s life.

At CHOP on Friday we discussed further issues for kids like Cannon who get so much radiation to their spine. We took Cannon to who we believe is one of the best in proton radiation – Dr Hill-keyser – we still believe that, but it doesn’t change that we burnt Cannon’s spine to save him as well as many other areas in his body. That comes at a price. Cannon now has early signs of scoliosis. One shoulder is higher than the other , one nipple higher than other and some curving of his back and spine. Is it life

threatening? Will he die? NO… is it potentially more therapies , more surgeries , more specialists, more self conscious behavior ? Yes it is. I don’t accept that is okay. I don’t want that for the family who right this very moment is hearing the words “ your child has cancer “ I want them to get a treatment that will make their child a survivor and live a good happy life with quality of life in it. Not a lifetime of secondary cancers, eye issues, infertility, hearing loss, learning disorders, or organ failures like we saw just a few days ago with Sweet Sally Sunshine!

By the end of this month I’ve personally been a part of some 20 pediatric cancer related meetings or events across 6 states and team CKc even more than that… why…. because I truly at my core believe, whether arrogant or not that we can change this status quo . That in the next decades that children will be cured in different , better ways and that it won’t leave them with lifelong issues.

2/3 of kids who survive five years from their original diagnosis will face lifelong challenges including secondary cancers and organ issues.

There are no survivors of certain brain cancers, and many forms of brain cancers have less than a 10 percent chance of survival.

I am not OKAY with either of those statistics. Team CKc is not okay with it.

So together we work our little rear ends off as a team to change it.

In short.

I don’t accept what Cannon deals with, and I won’t accept anything else for your kids or the kid being diagnosed right this moment.

I am…

I continue to be…

Thankful for the fight.

Please say a little extra prayer for Cannon as we navigate these new waters as a family. Thank you.

CKc Awards the Grayson Jack Clinical Research Grant During Childhood Cancer Awareness Month

Grant Will Allow Testing of a New Oral Drug Used to Treat Pediatric Brain Tumors with Dire Outcomes

Dr. Cassie Kline-Nunnally, the first-ever recipient of a Cannonball Kids’ cancer (CKc) Young Investigator grant, is receiving a new $100,000 grant from CKc to begin a clinical trial which measures the efficacy of a new oral drug on brain tumors including diffuse intrinsic pontine glioma (DIPG), MYC-driven medulloblastoma, and high-grade glioma (HGG). The outcome for these specific pediatric brain cancers are very poor. This new study, developed and led by Dr. Kline-Nunnally at UCSF Benioff Children’s Hospital, creates options for up to 30 children and will be accessible at 18 children’s hospitals across the United States, Washington D.C. and Canada. The grant, awarded during Childhood Cancer Awareness Month, is named for Grayson Jack, a two-year-old boy from Winter Garden, FL, who was diagnosed with an Astrocytoma Grade 4 brain tumor after he turned two. Grayson is currently undergoing treatment at Arnold Palmer Hospital for Children in Orlando, FL.

“It is truly a great privilege to award Dr. Kline-Nunnally this grant and continue to support her impactful research as she creates a growing footprint in the world of pediatric cancer,” said Melissa Wiggins, CKc Executive Director. “As our first Young Investigator grant recipient in 2017, Dr. Kline-Nunnally has proven the benefit of helping to jumpstart a career which helps keep an immensely talented investigator engaged in a field that is notoriously financially difficult to enter and remain in when just starting out.”

Dr. Kline-Nunally expressed her appreciation for CKc’s support at each step of her early career. “Cannonball Kids’ cancer has been critical to my research and clinical progress – offering me the opportunity to pursue my research, continue to effectively care for children with life-threatening brain tumors, and augment my skills and focus within clinical research in pediatric neuro-oncology,” stated Dr. Kline-Nunally. “With CKc’s support, I have been able to successfully continue my clinical and early phase developmental therapeutic research as a first-year faculty and I am now the Principal Investigator on two clinical trials and the co-Principal Investigator on one – all of which are investigating therapies for patients with no standard of care and, in most cases, no known cure,” Dr. Kline-Nunally continued.

Including this research grant, CKc has funded a total of 12 research grants, since inception, for basic research studies and clinical trials. The grants, totaling almost $900,000, will provide up to 90 children with access to “bench-to-bedside” treatments that could help give the chance to live to children who have previously been told there was nothing more to be done to save them.

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!

Kicking cancer’s @#* – CKc In The News!

August 14th was a huge day for Cannonball Kids’ cancer (CKc), for pediatric cancer, and for the family of Nolan King. That was the day CKc made good on their promise. It was on that day that CKc awarded Nemours Children’s Hospital with a $25,000 check to help fund a “seed grant” for research in which the Zika virus is used to attack deadly hepatoblastoma cancer cells. Zika has shown great effectiveness in destroying cancer cells in other types of cancer.

When Nolan died on April 1st, 2017, from complications of his treatments for hepatoblastoma, he was just 3 years old. That very day, CKc made a promise to fund a research trial for hepatoblastoma, the most common form of liver cancer in children, in his honor. The current “treatments” for hepatoblastoma are simply watered-down adult treatments that ravage children’s bodies, causing irreparable damage and even death.

Our goal is to make sure that what Nolan, kids like him, and their families go through is not in vain. That is why it’s our mission to fund innovative research grants to learn about and discover new ways to treat pediatric cancer, and to find treatments that do not kill children or strip them of their quality of life.

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