Cure Childhood Cancer

CURE Blog


May 16th, 2012

Inspired Teenager a Finalist in Essay Contest

Ellie Collins, a fourteen-year-old girl, recently had to experience the loss of a dear friend to childhood cancer. His name was Patrick Chance and he was diagnosed with stage IV neuroblastoma at the age of three. On his birthday, six years later, Patrick lost his battle with cancer.

Ellie could have felt defeated. She could have been angry that her friend had been taken from this world by such a terrible disease. Instead, Ellie found motivation and hope in the future of medicine and the eventual cure of childhood cancer.

Inspired, Ellie wrote an essay for her school contest entitled “Making Hope” that discussed CURE Childhood Cancer, our mission and our vision. Her essay was chosen as a finalist and she was asked to give a speech in front of 250 people.

We are truly blown away by Ellie’s amazing essay and her words of confidence in the work that CURE is doing.

Ellie has allowed us to share her essay to the CURE community. We hope that you enjoy it as much as we did. Thank you Ellie!



 Making Hope 

On January 14, I attended a dear friend of mine’s funeral. Patrick Roberts Chance died on his birthday. He had just turned nine years old. At age three, Patrick was diagnosed with stage IV neuroblastoma. Six years later, the cancer had spread and he could no longer fight.  Out of the thousands of children, according to the National Cancer Institute, that die each year from pediatric cancer, Patrick is just one. CURE Childhood Cancer is an Atlanta based organization dedicated to finding the cure for pediatric cancer. The money they collect each year funds targeted research and supports patients and their families on their grueling fight with cancer. CURE has made a difference in the thousands of kid’s lives affected by pediatric cancer each year. Their research and support give hope to the families who have little hope left.

In 1975, Dr.Abdel Ragab, Emory University’s first pediatric oncologist or cancer doctor, saw the need for money to support funding for research. Dr.Ragab also saw the desperate need for support with the families spending countless days and nights in the cancer ward at the hospital. Volunteers started funding immediately and in 1989, they had raised enough money to move the research lab from Grady Hospital to Emory Campus, where most of the patients were being treated. When CURE was established there was a survival rate of ten percent and amazingly the survival rate is now eighty percent.

Being a very unique organization, CURE has a program that trains future pediatric oncologists. According to the official CURE website, “While many organizations craft their treatments, programs, and even faculties based on what today’s medicine has to offer, we’re doing something a bit different. We’re looking to the future. To the medicine of tomorrow and all it has to offer kids with childhood cancer.” CURE’s research program is now one of the largest pediatric oncology programs in the country. With the money they raise, they support many research facilities. These include the AFLAC Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta, Emory University, Memorial Sloan-Kettering Cancer Center, and St. Jude Children’s Research Hospital. Specifically, they focus on Leukemia, Bone marrow transplant, Glioma, Osteosarcoma, AML, Neuroblastoma, Medulloblastoma, and Survivorship. Presently, they are working on a new drug for AML with promising results.

One very special part of CURE is their patient and family support program. The entire program is made entirely of volunteers. There are three main programs: Early Outreach, Critical Needs Care, and Caring for the Caregiver. Early Outreach provides families whose kids have been diagnosed support and resources for their journey with cancer. Critical Needs Care tends to the most critical and urgent needs of patients and their families with giving meals, financial aid, and support for death. Caring for the Caregiver takes care of all the nurses and doctors working with the patients by bringing food and honoring them on special days. Programs sponsored by CURE try to make every family battling cancer as comfortable as possible, and bring some joy into their life.

Everyday you hear about kids battling cancer, but CURE has taken the next step and has set up funds honoring some heroes among us. Some examples of these funds are: The Hayley Hunter Research Fund, The Sam Robb Fund, and Press On to CURE Childhood Cancer honoring Patrick Chance and Brennan Simkins. Events are held annually to raise money and awareness for all their funds, also they raise money to support the organization itself. All of CURE’s exceptional work and volunteers have won it the Charity Navigator’s Highest Rating and other outstanding awards.

Organizations like CURE are changing lives by bringing hope to children and their loved ones with their life changing research and heartfelt support program. To the thousands affected by cancer each year, CURE is like a super hero bringing the little hope they have into their lives. Instead of flying men with capes, their heroes are dressed in scrubs and do something very similar to the flying superheroes. They save lives.

 


May 15th, 2012

Win Pitching Lessons from Tom Glavine

Vote for Tom Glavine, former Atlanta Braves pitcher and 1995 World Series MVP, and your child could win a one-on-one training experience with Tom!

As a part of Club Diamond Nation, the first virtual baseball and softball academy, several Major League Baseball players, Olympic softball players and coaches are competing to win $15,000 for their selected charities.

By voting for Tom Glavine and joining his team, you are helping him in his race to support CURE Childhood Cancer. In addition, you are simultaneously entering for a chance to win a training session with the star.

 

Starting today through July 15, 2012, fans can visit Club Diamond Nation’s website and vote for the site’s stars. The star that receives the most fan support will win $15,000 for his or her selected charity, while the other four charities will each receive a $2,500 donation.

Other stars involved are Barry Larkin, Jennie Flinch, Kevin Long and Jack Cust Jr.

For more information on Club Diamond Nation you can watch a trailer by clicking here.

To join Tom’s team click here.


May 14th, 2012

CURE Creating a Youth Council for Committed Students

Socially engaged young people can effect positive change. They have the skills and capacity to make a contribution.

Which is exactly why CURE Childhood Cancer is creating a Youth Council that is committed to engaging young adults as people with talents, opinions and a desire to make a difference. 

This is a great opportunity for outstanding, rising high school sophomores to learn about community service and nonprofit work from the inside out while further developing important leadership skills. At the same time, we know CURE will benefit from having the impassioned involvement of innovative, creative and committed youth.

The Youth Council will serve as ambassadors for CURE Childhood Cancer in the community and serve two years of service. Meetings will be held every other month between the months of September and May (September, November, January, March, May). In addition, Youth Council members will attend at least one meeting of CURE’s Board of Directors. Youth Council members will have opportunities to engage in CURE’s work through events and other CURE activities being done at CURE and at the events that CURE runs.

Applications can be downloaded by clicking here and should be returned by June 30, 2012 to:

Attention: Kristin Connor
CURE Childhood Cancer
1117 Perimeter Center West, Suite N402
Atlanta, GA 30338

Or via fax at (404)986-0038

Or by email to kristin@curechildhoodcancer.org

Interviews will be scheduled for selected applicants. The Youth Council will be announced by August 30, 2012.


May 13th, 2012

A Mother’s Reflection

This Mother’s Day, CURE Childhood Cancer would like to thank all of our mothers for your love, support, and dedication. We would like to share with you this letter from Annamarie, the mother of Sam Robb.

Friends, Family, and Supporters,

Becoming a mother is a life changing moment in a woman’s life. I was blessed to be the mother of four. A second life changing event is to hear that your child has been diagnosed with cancer. With the diagnosis, we counted our blessings in the improvements of treatments, new research, the wonderful doctors and nurses, etc. As the mother, I led our family down the road of childhood cancer to realize the challenges are unending.

When this journey began, it seemed like yesterday. Sam was a sophomore in high school, the starting quarterback for his high school team. At the time our world was immersed in sports for all the children, and Sam had aspirations of playing football in college. Sam was a big, strong young man, 6’4” over 200 pounds with no fears. Our family was humbled when a perceived sports injury turned into bone cancer. Within a day, we confronted the realities of surgery, chemotherapy, etc. for the next year. As a mother, I wished the diagnosis was for me, only to spare my child of this disease.

It was hard to watch Sam deal with the consequences of bone cancer. The initial setback was the reality that the sports he loved and played – football and basketball – were no longer an option. Young people learn to adapt quickly, and Sam focused upon playing baseball as his primary sport. After an 11 month journey filled with surgery, chemotherapy, monitoring counts, threatening infections, and extended hospital stays. Sam started to rebuild his life.

Being a teen cancer survivor has as many challenges unique to them, and at times these challenges were more difficult than the treatments. As a mother, I worked to put the cancer behind us to regain the normal routines of life, but deep in my heart, l knew life would never be the same. Sam had a deeper perspective with an intense zeal for life that would challenge the most patient parent. He had an intuitive sense of what was truly important in life, but this maturity could be difficult for authorities to understand.

Three years and nine months later, my third life-changing message was to hear the word “relapse.” Sam and I sat looking at the chest X-ray to see a mass in his chest that we knew was not good. The doctors apologized for the life-threatening diagnosis. Sam had journeyed with battling cancer by redefining his life, pursuing his dream of playing college baseball, anticipating a transfer to Clemson University, and all of this changed. Once again, Sam was leading the way as a young adult; we consulted with renowned surgeons to see if he could have any hope of a miracle to remove the mass growing in between his lungs. Sam knew this surgery was the Big Play that was very risky, but he would never hold back.

Prior to his last surgery, Sam’s spirit prevailed to enjoy life, to be with friends and family. He crammed so much living into days before surgery to create the weekend of a lifetime: taking friends to UGA, going to a BRAVES game, and being with family and friends into the wee hours. He refused dwell upon the pending surgery on Monday morning.

Sam’s spirit to live in the moment was the perfect example to enjoy life today. I was always touched with his ability not to fret over the future – as most adults and teens do today.

My saddest day was when the surgeon told me Sam did not survive the surgery due to complications. The irony was Sam looked so healthy and strong, but did not survive – so hard to believe.

We are now approaching five years since that June day when we lost Sam in surgery. I reflect upon our journey with an awareness of what so many other families have to endure when their child becomes ill with a threatening disease. I know Sam’s passing while in surgery was a true blessing from God. He did not suffer in the end. I do not believe Sam’s death is God’s plan or God gives you these challenges in life. More so, Sam’s death along with the death of any child is a hard reality of how imperfect our world is. God has provided the faith, family and friends to help us handle the tragedy.

Our family has taken the sadness, anger and grief and channeled it into efforts that keep Sam’s spirit alive. We created The Sam Robb Fund  within CURE Childhood Cancer to support pediatric cancer research through a Fellowship Program. We want to provide hope for the future by investing in young doctors. Our fundraising events support this fund while bringing people together to remember the good times.

Sam’s final words to me before going into surgery were, “Mom, don’t worry. Go make a friend.” We would do anything to have Sam with us today. We are comforted by the friends who help us perpetuate Sam’s spirit. His tattoo motto, Fightin ’till the Last Breath, says it all for the mothers and their children still fighting childhood cancer.

- Annamarie Robb


May 11th, 2012

New Act Gives Hope for Childhood Cancer Research

Pediatric cancer remains the number one disease killer of American children, with about 35 children diagnosed every day. However, since 1980, the Food and Drug Association (FDA) has approved only one new drug for treatment of childhood cancer, compared to 50 for adults.

This is often a result of pharmaceutical companies hesitancy to develop drugs for rare pediatric diseases because it requires making an investment in products that are unlikely to cover the high costs associated with their research, development, marketing and distribution. Developing products for children is particularly challenging because of the difficulties associated with conducting clinical trials on this patient population. 

However, Congressmen Michael McCaul of Texas and G.K. Butterfield of North Carolina have recently authored a provision to combat this particular issue.

Yesterday, the House Energy and Commerce Committee approved The Creating Hope Act of 2011, which will incentivize pharmaceutical companies to develop new drugs for children with rare pediatric diseases, such as childhood cancers.

“Children living with these life threatening conditions need access to newly developed drugs,” said Congressman Butterfield.  ”Whether a disease is rare or common, the need for effective care and potential cures is the same. The Creating Hope Act provides a much-needed incentive to promote research and development that will ultimately save lives.”

According to Congressman McCaul, The Creating Hope Act will offer the best chance of encouraging pharmaceutical companies to develop treatments for children at no cost to taxpayers.

“This legislation will give hope to countless numbers of children and their families who are unable to treat their disease because of a lack of adequate treatments,” said Congressman McCaul.

For more information on The Creating Hope Act you can click here.


May 9th, 2012

Beautiful Photos from Lauren’s Run and CURE Annual Picnic

The 18th Annual Lauren’s Run and CURE Annual Picnic was such an amazing day for us. Lynn Crow was our photographer for the event and now that the pictures are ready, we are so excited to revisit the memories whenever we want!

Lynn Crow donates so much of her time to CURE Childhood Cancer and her love for the cause is evident from the second you meet her. Lynn is not only compassionate, but she is immensely talented and was able to capture the essence of the day beautifully in each and every photograph. Check out a small sampling of our favorites below and click here to look at all of Lynn’s shots from the day. Thank you, Lynn Crow. You are amazing!


May 8th, 2012

United Methodist Church Hosts 8th Annual Race for CURE

For the last eight years the Hamilton Mill United Methodist Church (HMUMC) in Dacula has hosted a 5K to benefit CURE Childhood Cancer. Please join us for this family-friendly run/walk on Saturday, May 19 at Little Mulberry Park at 8:00 am.

The race will start at Hamilton Mill United Methodist Church and loop around Little Mulberry Park.

The race will be timed and overall male and female finisher awards will be given out.

If you are not a walker or runner or cannot attend the race, you can still participate as a Phantom Runner by donating $10. Phantom runners can pick up their t-shirt at the church after the run.

In addition, there will be food and entertainment including Pastor Dave in a dunk tank.

Registration is only $5 a person and proceeds from the run will benefit CURE.

Hamilton Mill United Methodist Church 5K
Little Mulberry Park (Hog Mountain Road Entrance)
Please park at HMUMC
Saturday May 19, 2012
8:00 am

To register print this form and mail it to:

HMUMC Fun Run
1450 Pine Road
Dacula, GA 30019

 


May 4th, 2012

Play for Patrick Tennis Tournament Benefits CURE

Join the race to cure childhood cancer by participating in the 6th annual Play for Patrick Tennis Tournament. Being held at Druid Hills Golf Club Centennial May 17-20, the event will feature Doubles, Junior’s, Men’s, Women’s and Pro Am tournaments, providing an opportunity for people to play of any skill level.

Other activities of the weekend include a silent auction, buffet luncheon and a family BBQ.

Proceeds from the event will benefit the Press On to CURE Childhood Cancer Fund, which was formed in June 2006, by Stephen and Erin Chance after their 3-year-old son, Patrick, was diagnosed with Stage IV neuroblastoma.

Since 2006, Press On has raised and directed more than $500,000 to neuroblastoma and AML research being conducted at Children’s Healthcare of Atlanta, Memorial Sloan Kettering Cancer Center, Children’s Hospital of Philadelphia and St. Jude Children’s Research Hospital.

6th Annual Play for Patrick Tennis Tournament
May 17-20
Druid Hills Golf Club Centennial
740 Clifton Road Atlanta, GA 30307

For a schedule of events click here.

Registering online is easy and can be done by clicking here.


May 2nd, 2012

Finding a CURE Through Music

In 2011 Ryan Burton was living what most would consider a normal life—spending time with his wife and helping raise his stepdaughter, Callie. Then, in September the family was blindsided by the news of doctors being told Callie had been diagnosed with acute myeloid leukemia.

“My wife and I never saw it coming,” said Ryan. “Life changed in a heartbeat. We spent the next six months in a hospital living every parent’s nightmare.”

In an international effort to help raise money to fund research and find a cure for childhood cancer, Ryan began a music-based charity movement Sometimes You Gotta Fight. The song is a collaboration between Ryan and Canadian songwriter/producer VANN.

Two decades ago, Ryan Burton was a full-time musician in Canada performing in popular Montreal rock band I.C. RED. Now a US citizen living in Georgia, he felt music could be the ideal messenger and reached out to his old band mate. The two reunited to write and record music together for the first time in 20 years. The result was Sometimes You Gotta Fight. Burton has also started SONGS CURE CANCER to inspire other bands and artists to get involved in the fight by recording songs and playing shows to raise funds for the cause.

“Your first reaction is to shut the world out and focus on your family,” reflects Burton. “But a beautiful little girl is alive today because of all the research that existed before she got sick. Now that she is doing well, my wife and I felt like we had to pay it forward – even if it meant sharing a very private story.”

The song, Sometimes You Gotta Fight can be downloaded on iTunes for 99¢ and all proceeds will go directly to CURE Childhood Cancer.

“This movement is about doing a little bit for a big result,” explains VANN. “We’re all busy and have limits on what we can do. But we’re only asking people to download a song for 99¢ and forward an email to friends so that they can do the same. That’s all it takes for you to save lives. Don’t wait until cancer comes into your life to start making a difference.”

To download the song click here.

You can also support the Burton family by joining the Facebook group Cure for Callie by clicking here.

 

 

 


May 1st, 2012

Care Affair Birdhouses Raise Over $4,000

On April 21 the Tri Delta Alumnae Atlanta Chapter hosted the 29th Annual Care Affair to support CURE Childhood Cancer. The event was an evening of dinner, live music and exciting auction items including weekend getaways, fine jewelry, restaurants, spa, and entertainment options.

Amongst the auctioned items were birdhouses that were created by some of the children affected by cancer. The birdhouses raised a total of $4,100 for CURE’s cause in funding research and supporting affected families.

Below are the stories of each of the children whose birdhouses were auctioned at the event.

Jacob Moore

Jacob was diagnosed with Acute Lymphoblastic Leukemia in November 2009. Although Jacob has had over 100 surgeries and procedures (including over 25 spinal taps, GI, heart, ENT, eye, IV port for chemotherapy, etc.), it hasn’t stopped his energetic and loving spirit to succeed in life. He currently receives over 4 therapies a week including physical, music, occupational, speech and behavioral. Due to hard work of many people Jacob is now starting to talk, loves to read, play the piano, bells and xylophone, ride horses and participate in baseball for the Alpharetta Braves team. Jacob’s hope and dream is that society will see him for his abilities and not disabilities, as he continues to amaze everyone that he encounters in the world.

 

Emily Siddell

Emily came into this world fighting for her life and has had to learn to adapt to the changing battles. Since she was born she has had surgeries for a heart defect and a tracheoesophageal fistula.  Then in 2011 she was diagnosed with a rare form of Leukemia called Philadelphia Positive Acute Lymphoblastic Leukemia. Since then Emily has been through an especially difficult course of treatment since her type of leukemia is aggressive and difficult to treat.  She continues to smile and enjoy the simple things of life like painting, playing with her sisters, or just being with family.

 

Audrey DeShetler

In 2010 Audrey, was diagnosed with stage 4 high risk neuroblastoma at age 5. Prior to her diagnosis, Audrey had been complaining of moderate to severe leg and stomach pain that was confirmed as cancer after an ultrasound, CT, scan and biopsy. Audrey has since undergone 6 rounds of chemotherapy, 6 surgeries, 2 stem cell transplants with high does chemotherapy, 12 rounds of radiation, and 5 rounds of immunotherapy with antibody treatment. Fortunately, in August 2011 Audrey was declared to be in full remission with no evidence of disease. Although, Audrey does have lingering pain from time to time, she continues to thrive with a positive attitude and a silly sense of humor.

 

Elena Tate 

Elena is currently battling cancer for the second time. She relapsed with Acute Lymphoblastic Leukemia, in February 2012. However, no matter how bad her day may be, she still smiles and encourages those around her. Unfortunately, instead of spending time at the beach and enjoying carefree days playing with friends, Elena’s summer will be spent receiving a bone marrow transplant and fighting for her life.

 

Julia Johnson

Julia began treatment for cancer in 2009 and ended in 2011. Now, Julia is a healthy 11 year old who loves reading, riding her bike, playing her guitar, and fishing.   She loves the beach and spending time with her dog, “Stanley”.  She is an excellent student and was so brave throughout her treatment.  Julia’s courage has been so inspirational and amazing, and her smile remained throughout.


  • SOMETIMES YOU GOTTA FIGHT

    Musicians VANN and Ryan Burton's song "Sometimes You Gotta Fight" is available now! Click here to watch the video and click here to download. All proceeds are donated to CURE.

  • YOUTH COUNCIL

    Rising High School Sophomores are invited to apply for CURE's Youth Council. Applications are due June 30, 2012.  Click here for more information.