First National Clinical Trial for Incurable Children’s Cancer Launched by Van Andel Institute

GRAND RAPIDS, MI – The first national clinical trial ever approved to study all incurable children’s cancers is underway at Van Andel Institute.

Of the 10,000 pediatric cancer cases diagnosed each year, about 25 percent are considered incurable even with aggressive treatments. The study will analyze the molecular makeup and genetic mutations of individual tumors to create a targeted treatment plan for each patient.

“We are very excited to have this study at Van Andel Institute,” said Dr. Giselle Sholler, the pediatric oncologist leading the research.

The Food and Drug Administration approved the study, which will include up to 50 patients and will be conducted at 15 hospitals around the country, including Helen DeVos Children’s Hospital.

Read more…

Shepard Kelly and his Family Take on the Ultimate Fight

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Shepard was diagnosed with B-cell ALL on August 23rd, 2011; after his parents noticed that he was not his typical self and had a slightly bloated stomach.  After a call to his pediatricians office, his parents decided to take him to the ER. He was quickly admitted and the hospital staff started running tests to see if they could pin point what might be causing his symptoms. After five hours at the hospital, Shepard was discharged with no insight into what might be causing his issues.

After his trip to the hospital, Shepard was mostly back to normal but continued to have bouts of fatigue and stomach pain. On the 22nd, he woke up in extreme pain and his pediatrician instructed his parents to take him to the hospital. After more tests were run, doctors noticed an abnormality in his blood that looked like leukemia.

Shepard Kelly

A month after his second birthday, the diagnosis was confirmed and Shepard began his journey with leukemia. This journey would include nearly nine months of intense chemotherapy followed by maintenance for over two years. While the journey has not been easy for Shepard, his resilience has been incredible. Though he is only half way through treatment, he and his family are confident that he will beat leukemia.

This year, Shepard and his family are raising awareness for children’s cancer as Ultimate Hike Heroes. To learn more about the Ultimate Hike and how you can join the fight against children’s cancer, visit www.ultimatehike.org

Clinical Trials: Offering New Treatments Today

Clinical trials are the last step in a long process that begins with research in a lab and ends with new treatment options for children with cancer. In short, treatments used today are the result of past clinical trials. Unlike cancer in adults, when a child is diagnosed with cancer, they are almost always enrolled in a clinical trial.  In fact, more than 60% of children undergoing treatment for cancer are enrolled in a clinical trial. This makes clinical trials essential to developing new treatments for children in need today.

There are three phases to clinical trials, each of which plays a different role in ensuring that treatments are safe and effective for children with cancer. Phase I trials are the first stage of testing a drug in humans and are used to find a safe dose, they usually involve 15 – 30 people and their goal is to measure how the treatment affects the human body. Phase II trials take place after Phase I and determine if the new treatment is effective in treating the cancer and measures the side effects of the treatment on the body. Involving less than 100 people, this phase is important in determining if the treatment will be effective against the cancer. Phase III trials can involve 100 to several thousand patients and compare the new treatment being studied with existing treatments, measure effectiveness.  When a Phase III trial is complete, if the data show the treatment to be effective, it can become a standard of care for patients with cancer. Sometimes, Standards of Care are studied in what is called a Phase IV trial.  Phase IV studies some aspect of the Standard of Care, for example, long-term side effects of the treatment.

In children’s cancer, participation in a clinical trial usually spans 2-3 years and in the later phases, does not involve placebo medication.  This type of research offers widespread impact for families because their child’s participation often promises the best chance for survival.  At CureSearch, we believe that clinical trials offer children a better chance for survival by delivering treatments that show the greatest potential for a cure.

The Importance of Measuring a Charity’s Impact

I’ve been an employee of CureSearch for Children’s Cancer for six months.  My position here is to raise money by inviting people to contribute to our search for cures.  I love fundraising and most people think I’m crazy for it.  More on that another time.  Today I want to tell you about something I’ve been astonished by since I arrived here.

At CureSearch, we talk about overhead and fundraising ratios A LOT, too much.  In my time here, we’ve talked about this topic more than I have in my entire 25 year career with other charities.  CureSearch used talked to you about overhead to program ratios because federal grant money allowed them to far surpass most organizations.  But such ratios are not sustainable if an organization wants to move forward and grow through public philanthropy.  So, now we find ourselves talking about ratios because we’re worried that you, our donors and investors, will be concerned when the numbers don’t look as great as they have in the past.

It’s my suspicion that in the past CureSearch, like many other charities, used overhead ratios to measure and talk about success.  But I propose to you that such a model doesn’t work.  In fact, after you finishing reading this blog post, watch this 18 minute video on “Why the way we think about charity is dead wrong.”  This video, with over 1.2 million in two weeks, will transform the way you think about charities.

The real measurement should be about how we measure impact in a children’s cancer research organization.  How do we prove to you that your gift makes a difference in the lives of children with cancer?  Scientific research can take 20 years to get from the lab to the oncologist’s office.   With such a long window, how can CureSearch demonstrate its impact and continue to engage you as a donor?

These are questions we wrestle with every day.  We know the answer is NOT in the measure of our overhead expenses.  And we know that part of the answer lies in showing you successful results from the research we fund with the dollars you so generously donate.

We just released our 2013 Funding Platform that includes our new Acceleration Initiative.   We’re dreaming big.  We’re innovating.  These qualities are who CureSearch is now and will continue to be because children with cancer deserve nothing less.

Innovation is our new overhead, and it costs money to do it right.  Doing it right will lead to more children cured. So the conversations at CureSearch continue, and happily, we focus more of our time now on impact.

I invite you to join our conversation on this subject.  Tell us what you want.

Hitting the Links for Children’s Cancer

The MJ Golf Classic To Be Held on April 19th

MJ-Golf-Classic-1 A long standing tradition in the Texas community, this year’s MJ Golf Classic, held on April 19 – 20, will celebrate 4 years of supporting CureSearch for Children’s Cancer.  The weekend features three rousing rounds of golf at the Jay Morrish Golf Course at Champions Circle on Friday and Saturday as well as a kickoff bash with the popular Texas Hold Em Poker Tournament at the Texas Motor Speedway on Friday night. Participants can also take part in the Texas driving experience, a unique driving adventure on the Speedway where

MJ-Golf-Classic-2professional racing instructors provide an inside look into the sport of road racing as participants ride shotgun for an few intense laps around the Texas Motor Speedway.

Saturday morning, children’s cancer supporters will gather for the Tarrant County CureSearch Walk, a unique event because of its location at Texas Motor Speedway, where a special moment is taken to remember and honor those who have lost their fight and celebrate the CureSearch Champions who are in treatment or are survivors.

Read more….

Late Effects of Treatment

When a child is diagnosed with cancer, the focus is often on treatment, but three out of five childhood cancer survivors experience late effects due to their treatment.  These late effects are problems related to cancer treatment that occur or persist after treatment is completed. It is best to catch these early, so treatment can begin right away. When detected early, these effects can be managed. This makes ongoing follow-up care for children’s cancer survivors important.

CureSearch for Children’s Cancer is proud that one of the many resources on our website is about late effects of treatment. In this section, at http://www.curesearch.org/Late-Effects-of-Treatment-for-Childhood-Cancer/, we offer practical suggestions for patients and their families to help detect and manage these late effects.

 

 

Seth Smiles

The youngest of five, Seth has always been easy going and has never met someone he didn’t like. Born with Down Syndrome, Seth was diagnosed with acute lymphoblastic leukemia (ALL) at 8-years-old.

Despite this diagnosis, Seth was always happy. His mom says that while Seth was more likely have ALL because of his Down Syndrome, the “always happy” personality that comes along with Down’s makes Seth incredibly resilient.

Throughout the time he spent in the hospital, he always asked for a hug when he met someone

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new, and often called his time with his nurses “dates.”

Seth underwent six rounds of chemotherapy, an extended stay at the hospital, daily injections, and countless medications. Throughout treatment, because Seth always stayed positive, his parents had to as well. Even if they were having a bad day at the hospital, or treatment didn’t seem to be working, they kept a smile on their face for Seth. His incredible attitude spread throughout the hospital and helped Seth reach the end of treatment in November of 2012.

Now in fifth grade, Seth is an active boy who loves cheering on his brothers and sister at their sporting events, and his training for the Special Olympics.  He is constantly learning new things at school, and loves his teachers, and friends. His family was excited to bring his infectious spirit to the Kansas City Walk on April 6th.