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, 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


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.

Researcher Seeks to Understand the Inner Workings of Rhabdoid Tumors

Alex KentsisAlex Kentsis, MD, PhD, decided to study rhabdoid tumors because they remain one of the most lethal childhood cancers.  Rhabdoid tumors affect mainly infants and young children and can be found in the kidneys, liver, soft tissue, and brain. Most children diagnosed with a rhabdoid tumor that cannot be completely removed through surgical do not have effective treatment options.  As a pediatric oncologist and investigator at the Dana-Farber Cancer Institute and Boston Children’s Hospital, Dr. Kentsis is working to understand the biology of this cancer, with a special emphasis on the genetic make-up of these tumors.

His research will focus on DNA sequences called transposons that can potentially move within cell genomes.  Almost half of the human genome is made up of DNA derived from ancient transposons, but their activity in tumor cells is not understood.  Researchers do know that when gone awry, they can potentially disrupt the normal workings of a cell.  Dr. Kentsis has found that in rhabdoid tumors, some of these transposons appear to be mobile with potential contributions to tumor’s growth and survival in response to chemotherapy.  Understanding of mobile DNA in rhabdoid tumors could ultimately help to lead to new treatments.

Read more…

Top Ten Reasons You Support CureSearch

You told us the Top Ten reasons you support CureSearch! Thank you to everyone who responded. At CureSearch, we are fighting for the future every child deserves and every parent dreams of, with support from people like you._TCP7704

1. Too many children are diagnosed with cancer; CureSearch is funding research that will lead to better treatments.

2. Because of the resources that CureSearch provides to patients and their families.

3. CureSearch supports research that is working towards finding a cure.

4. Because every child deserves the best treatment possible.

5. The CureSearch Walk allows me to raise awareness and funds for the 36 children diagnosed every day.

6. Through the Ultimate Hike, I can make a difference.

7. Because no parent should see their child suffer and through CureSearch we can find a cure.

8. Because CureSearch gives parents and children the voice they deserve in the fight against cancer.

9. CureSearch is focused on helping those children at the greatest risk of losing their battle.

10. Because the clinical trials that CureSearch supports allow patients to receive treatment at their local hospital.

Day in the Life: Megan Gertz

Megan GertzMegan Gertz is a Child Life Specialist at the Ronald McDonald Children’s Hospital at Loyola Medicine and also a committee member for the 2013 Chicago CureSearch Walk. Megan works with children and families to help them cope with the challenges of hospitalization, illness, and disability. She provides children with age-appropriate preparation for medical procedures, pain management, and coping strategies, and play and self-expression activities. Megan also provides information, support and guidance to parents, siblings, and other family members.   CureSearch recently caught up with Megan to learn more about her role, and what led her to this profession.

Q: What lead you to becoming a Child Life Specialist?

A: In high school, I babysat for a family whose oldest daughter was diagnosed with Wilms tumor. I continued to babysit for her through college and saw how much she loved the Child Life Specialists who took care of her. She fought hard for years, but unfortunately when she relapsed for the fourth time, there was nothing else the medical professionals or her family could do. I came home to be with the family, and this sweet little girl said to me, “Meg, you would be a great teacher, but I think you should work with kids like me.” At the time, I was studying to be a teacher, but immediately changed my major in honor of her.

Q: What is an average day like for you at the hospital?

A:I work with inpatient, outpatient, radiology, oncology, ER, NICU, Burn units at my hospital, so I get to work with children of all ages. I run and manage the play room, teen room, radio station and school room. I spend most of my days working with inpatients and enjoy getting to know them. I interact with patients through medical and play therapy, music therapy, pet therapy, and art programs. I also work with the entire family to provide support for the new diagnosis or treatment plan.  It is wonderful that I have the privilege of working with some families from diagnosis, through treatment, and after treatment, which means I am able to establish long-term relationships with many of them.

Q: What is your favorite part of being a Child Life Specialist?

A: My favorite part of my job is getting to know the patients and their families. Each and every patient teaches me a new lesson every day. Children are very resilient and always have a smile on their face, no matter what they are going through. I have learned that every day is a gift and that we should all live our days to their fullest.

I have made helping children with cancer my life’s passion. I put everything into it, if there is anything that can be  done, I want to be there helping and making a difference.