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CURE Childhood Cancer

It’s Personal

Every member of the CURE staff is whole-heartedly devoted to our mission. Each person understands the gravity of our work – children are literally depending on our success. However, for some CURE staff, the fight against childhood cancer is intensely personal. Seven have been in that unimaginable place – seated across from a doctor completely unprepared to hear those awful words: “Your child has cancer.” Each journey was unique, yet these seven emerged from their experiences changed – and forever committed to fight the disease that tormented, and in two cases, took their children.

“Although Mitchell was diagnosed 18 years ago,” said Lisa Odendahl. “I have vivid memories of my world turning upside down with no warning. It makes me sympathetic to families whose kids are going through treatment. Every day I wish I could do more. But, I have reconciled the fact that I can offer a listening ear, encouragement to live in the moment, and a glimmer of hope beyond treatment.”

The ability to understand and offer support as only one who has been there can do is a common theme.

“I have stayed in the same rooms, eaten the same food, know the same staff, and have endured the same sleepless nights,” added Kerry Kavlie. “I have prayed the same prayers. All cancer journeys are unique, but there is a common thread throughout. I now get to be that ray of hope for newly-diagnosed families to offer a light at the end of the tunnel and to care for them when the treatment isn’t going how they had hoped.”

A sense of urgency was also forged by the bedside.

“I can’t unsee what I’ve seen,” said Mark Myers. “The treatment Kylie received was devastating and, in the end, ineffective. She told me to cure childhood cancer, and I am determined that when I look into a patient’s eyes, I can honestly say I am doing everything within my power to make things better for them.”

“My eyes had been opened to a disease that was plaguing children and ripping them from their families forever, and very little was being done to fix it,” explained Mandy Garola. “I wake up each day knowing that I’m working and fighting for children who can’t fight for themselves.”

The experience left many with a pressing need to make a difference for other children and families.

“I was somewhat clueless prior to Katie’s diagnosis. I didn’t know about lack of funding for research, lack of new medicines, or risks of secondary cancers,” Karen Rutherford recalled. “Once the dust settled from our battle, I knew I had to do something productive with what our family had just been through. I know I can’t cure cancer, but I can walk alongside another family battling, be a shoulder for them to lean on, help serve a hot meal, and raise money for the vital research needed.”

We are often asked if our experience makes our job hard.

“It is sometimes so hard to see those sweet bald heads,” said Jenny Wilkins. “I always want to rub a bald head like I did Catie’s. I never do because it’s such a personal thing. But if I close my eyes, it takes me back. And while my work at CURE is focused on events, I still have the opportunity to meet amazing kids and families and that reminds me that God can use the suffering I’ve been through by allowing us to be there for and help others.”

“People always ask me how I can do what I do,” offered Kerry. “It isn’t always easy, but the good days far outweigh the bad. Giving back is not an obligation, it is a privilege. It is putting yourself aside, diving head-first into the trenches, and not turning back.”

“There are certainly difficult, heartbreaking days,” added Mandy. “But when I think of the children we’ve lost and the potential they possessed, it’s easy to press on. I’m better off having known these precious kids in the first place. I’m honored and humbled to be a part of an amazing organization like CURE.”

“For so many of us, this fight is absolutely personal,” explained Kristin Connor. “Nothing about it is a ‘job.’ We all know from our very difficult experiences that our children deserve better. They deserve the chance to grow up and pursue their dreams. We have to do what we can to ensure that happens. It’s not optional; we all feel compelled to lock arms and fight this fight together.”

There’s something special about the CURE staff, no doubt. We won’t stop fighting until every child is guaranteed a cure… after all, it’s personal.

A December to Remember

The bulletin board at CURE typically holds announcements and a letter or two. Tucked between the refrigerator and water cooler in the breakroom, it is rarely seen by visitors to the office. It’s really just for us. But in December, it came alive with pictures, notes, and cards and became a stark reminder of the lives we are touching because of the generosity of our donors.

Along with many sweet holiday wishes, one note says:

“My family dearly thanks you for your help with our utility bill last month. It could have meant less food, waiting for winter jackets, or quite a small Christmas for our family of 6. But you stepped in. You’ve truly blessed us.”

Another family in treatment benefited from our Holiday Angels program and wrote to say:

“Thank you all for looking out for my family this Christmas, because this year was NOT looking like a Christmas for us at all, but because of the CURE program we will have one.”

Tacked between warm letters such as these are pictures of children we met as bald patients who now are healthy and participating in life as a child should. Through the cards from families who have lost their children, we are reminded that our work is still not done; but we’re heartened to know that CURE remains a part of their family’s life and holiday traditions.

In that season of giving, you allowed us to do so much for families distressed by childhood cancer. During the month of December, we served nearly 1000 meals to patients and their families in treatment, including a special Christmas Eve meal at both campuses of Children’s Healthcare of Atlanta. Imagine the impact of a warm meal and a smile to those stuck in the hospital instead of at home for the holidays.

Imagine also being a parent balancing the high cost of treatment with your children’s wish lists. CURE donors stepped up to tip the scales and became Holiday Angels. Throughout Georgia, our donors provided gifts for 101 families whose Christmas or Hanukkah gift giving was unlikely. Between our little cancer fighters and their siblings, 300 children experienced holiday joy with gifts from their lists.

More than 125 families attended amazing holiday parties in Atlanta and Savannah, where children decorated gingerbread houses, made slime, ate snacks, and got to sit on Santa’s lap. Most importantly, they were able to take a break from the worries of treatment and enjoy the merriment of the season. One parent wrote:

“Our sweet girls had so much fun at the holiday party. They enjoyed the day and will remember the fun times. All the princesses and Spider Man were a hit and the girls enjoyed talking to Santa”

None of this would be possible without the generous support of donors like you. As we settle into a new year, we’re heartened to know your support didn’t end in December. You are with us all year long, and from the bottom of our hearts, we are thankful.

An Inside Look at CURE

By day, Kevin Kennedy works as a vice president with Morgan Stanley in the Institutional Securities Group. But if you have the chance to speak to him, he likely won’t want to discuss market information, strategic thinking, or challenges with listed derivatives trading technology. No, Kevin will tell you about his family, share pictures from his latest motorcycle adventure, or bring you up to speed with his other passion – helping children with cancer.

Kevin and his wife, Margaret Ann, had a first-hand experience with cancer when their eighteen-year-old son, Joe, was diagnosed with aplastic anemia, a rare bone marrow failure disease. Joe enrolled in a clinical trial at the National Institute of Health in Bethesda, Maryland. While the trial was not successful for everyone, it worked to send Joe into remission. Once in remission, Joe was abruptly released from the hospital. Weak from the treatment, Joe was unable to fly commercially or drive back to Atlanta. Kevin shared their dilemma on Caringbridge, and within an hour he had five offers to transport his family by private jet.

“I had seen people in need while we were in treatment. But that day showed me just how much people want to help children and their families,” Kevin recalled. “I couldn’t believe that people – many of whom we didn’t know – were making such kind offers.”

Upon arriving home, Kevin and his daughter attended CURE’s A Tribute to our Quiet Heroes luncheon in September 2007. Touched by what he saw there and the people he met, the Kennedys began fundraising and regularly attending CURE events. From the outside, Kevin felt that the organization was sound and well-managed. The more his family’s involvement increased, the more respect he developed for CURE. So five years later when he received a call from a CURE board member to discuss Kevin’s interest in serving on the board of directors, he jumped at the opportunity.

“I was thrilled to grow my relationship with CURE,” said Kevin. “But I did have a nagging little fear that when the curtain was pulled back and I drilled into the details, it would taint my perception of the CURE I had come to love. Fortunately, what I found out impressed me as I witnessed the heart of CURE come out in everything the staff did. I grew to love the organization even more!”

Because he had first-hand knowledge of the needs of patients and their families, Kevin immediately dove into CURE’s patient and family services programs. He also became an active part of the organization’s fundraising efforts and took a leadership role with the board governance committee. Later he served as board president for two years.

“As president of the board, I was able to dig even deeper into the inner workings of CURE. I saw the good, bad, and the ugly. Fortunately, there was more good than anything,” Kevin explained. “The staff and board of any organization have to work hand in hand to ensure success. The effort demands a well-orchestrated partnership. In my years on the board I truly enjoyed working with Kristin and the team, and I thought we all worked together very well.”

As Kevin prepares to rotate off the board, he reflects on his service, “I have loved my time on the board. Besides the rewarding work, over the years I have had the opportunity to meet many interesting and influential individuals and have made great friendships,” Kevin shared. “I’ve never been star-struck in my life, not until I had the opportunity to meet the Aflac Duck at CHOA!”

As he looks to the future, Kevin sees elevating the CURE message above other well-deserving charities and donor retention as two of the biggest challenges. He also views millennials and other non-conventional givers as a huge opportunity.

“No one will question what we are doing,” Kevin insisted. “Our cause is just and our organization is sound. We just have to be persistent and keep telling the story. I will miss being involved with the day to day workings of CURE.”

We will miss you too, Kevin.

 

 

The Difference You Made: CURE’s Fiscal Year Comes to an End

With the close of CURE Childhood Cancer’s fiscal year on June 30, 2016, we are eager to share with you the incredible difference you made over the past 12 months for children with cancer and their families. With your help, we raised more than $5.2 million to advance our mission!

Screen Shot 2016-07-22 at 10.04.32 AMThis year, CURE awarded nearly $2.7 million in grants to support research initiatives all with the goal of improving survival for those battling childhood cancer. We are focused on moving the needle ever closer to a cure for all children with cancer and advancing immunotherapies and other treatments which are safer and less toxic for children. Our grants funded 20 pediatric cancer research labs at top institutions around the country.

Supporting patients and their families is paramount to us, and you enabled us to do this well.

In total, our busy patient and family services team – with the help of dedicated volunteers – served dinner to 2720 and lunch to more than 6000 hospitalized patients, parents, siblings, nurses and survivors. They delivered 638 brown bag lunches to parents of hospitalized children in Atlanta and Savannah, more than 1060 snack bags to patients and families in Atlanta, Savannah, Augusta and Macon and 342 toiletry bags. More than 300 families received CURE totes at diagnosis full of practical items and tips from other families who have walked the childhood cancer journey. We assisted 229 families with emergency financial assistance grants totaling $114,747, and provided $20,000 in transportation assistance to 44 families. We distributed an additional $14,395 in gas, grocery and pharmacy cards.

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CURE recognizes the incredible psychological and emotional hardships of childhood cancer and offers families the opportunity to receive professional counseling. In the last year, we provided 56 counseling sessions. We also hosted more than 100 parents at bereavement weekends.

Screen Shot 2016-07-22 at 10.13.36 AMFamilies let us know the difference this support made to them. One mother wrote, “Thank you for all you have done during this difficult time in our lives. Without your help, many donations, meals, gas cards, Publix grocery cards and financial support when we had no money… we would have never made it this far. We are utterly indebted to your organization and plan to pay it forward as you have graciously shown us how to.”

We also hosted fantastic holiday parties in both Atlanta and Savannah and provided holiday assistance to 76 families, ensuring their holidays were special. And so much more – all because of you!

We could not do what we do without the help of each and every one of you. YOU are CURE and we are so grateful.

CURE’s Partners in Caring Counseling Program

At the heart of CURE Childhood Cancer is the desire to address the critical and urgent needs of families affected by childhood cancer. CURE recognizes that childhood cancer is an extremely difficult, traumatic diagnosis, in which treatment and outcomes put strain and stress on the entire family. To offer additional support, help and encouragement for families of children diagnosed with cancer, we connected with licensed counseling centers across the state of Georgia and launched CURE’s Partners in Caring (PIC) program in 2013.

The PIC program was designed to provide families’ access to professional counselors who understand how childhood cancer, and its experiences, can affect the psychological and emotional well-being of the entire family. Since the launch of the PIC program we have continually strived to break down barriers associated with accessing counseling services.  Our PIC network includes 24 centers and over 50 therapists across the state of Georgia!

Accessing the PIC benefit therapists is an easy process. To qualify, families must have a child who meets one of these qualifications:

  • Diagnosed with a childhood cancer, LCH, HLH, or aplastic anemia
  • Relapsed with a childhood cancer, LCH, HLH, or aplastic anemia
  • Passed away due to childhood cancer, a cancer-related circumstance, LCH, HLH or aplastic anemia

The PIC program provides up to ten (10) counseling sessions at a minimal cost to families. Additional details:

  • If you choose to utilize these counseling services, CURE will pay 100% of the first session.
  • After the first session, families are responsible for $25.00 copay for each additional session (sessions 2-10).
  • Counseling sessions may range from individual counseling for the patient, siblings and/or parent to marriage counseling, grief counseling, or any combination of these services.
  • You also have the option to divide the 10 sessions between multiple family members based on your family’s needs.

To sign up or learn more, contact Karen McCarthy at karen@curechildhoodcancer.org.

CURE Executive Director Kristin Connor Named Atlanta Magazine’s “Women Making a Mark” Honoree.

Each year Atlanta Magazine recognizes “Women Making a Mark,” placing a spotlight on women from our community who exhibit tireless dedication, strong leadership and impassioned goodwill. We’re thrilled to announce CURE Executive Director, Kristin Connor, was just named one of this year’s Women Making a Mark honorees. Please enjoy a transcription of the article, which is available on-stands now. 

Screen Shot 2016-06-02 at 4.08.52 PM“Kristin Connor didn’t know an unborn child could get cancer. The successful business litigator was thirty-three weeks pregnant in 2001 when an ultrasound revealed a mass on her son’s tiny spine. Brandon was diagnosed with neuroblastoma at one month old. At age two, he was set to undergo a complex surgery to remove the tumor. But the day before the operation, a last-minute MRI showed nothing short of a miracle. The tumor has simply disappeared.

Now the executive director of Atlanta nonprofit CURE Childhood Cancer, Connor still has no explanation for her family’s happy ending. (Brandon is now 14 and thriving.) But it was other family’s stories she couldn’t shake – like a friend whose child suffered thirty rounds of chemotherapy, only for the cancer to return weeks later. “I thought, ‘This is madness. We have to stop this madness.'”

She started pressing the American Cancer Society for more funding for pediatric cancers (the vast majority of national cancer research dollars go to adult forms). A mutual friend arranged a meeting with Tom Glassine’s wife, Chris; the Hall of Fame pitcher tapped Major League Baseball to raise $2 million for the cause. That feat earned Connor a job with CureSearch, a national childhood cancer nonprofit. A year and a half later, Atlanta’s CURE Childhood Cancer contacted her about its top post.

In her decade long tenure, Connor, forty-seven, has furthered CURE’s mission of offering financial assistance, counseling, meals, and other support to affected families. But she has also built a research juggernaut. With the help of her board of directors, she has increased CURE’s annual investment from $200,000 to $2.5 million to recipients such as the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta and the Vanderbilt-Ingram Cancer Center at Vanderbilt University. Advances in these laboratories could lead to a 100 percent cure rate for childhood cancers in as soon as twenty years, Connor says. And that would let all families have their happy ending.”

University of Georgia Head Football Coach Kirby Smart Selects CURE Childhood Cancer as Charitable Recipient at 2016 Chick-fil-A Peach Bowl Challenge Golf Tournament

The Chick-fil-A Peach Bowl Challenge has announced the official pairings for its 10th annual charity golf tournament. A 13-team field of NCAA head coaches and celebrity alumni will compete for a first-place prize of $100,000, split evenly between their University’s scholarship fund and the coach’s charity of choice. We are thrilled to announce that University of Georgia Head Coach Kirby Smart has selected CURE Childhood Cancer as his charitable recipient!

Even greater news – all participating teams will receive a portion of the $540,000 total purse, which means CURE will receive a minimum donation of $10,000.

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“We created this event to help fulfill our mission to positively impact people’s lives through best-in-class events that create scholarships and charitable donations,” said Gary Stokan, president and CEO of Peach Bowl, Inc.

Over the past nine years, the Chick-fil-A Peach Bowl Challenge has provided $5.3 million in scholarship and charity. Proceeds from the event benefit endowed scholarships at the participating universities and charitable foundations selected by the coaches, benefitting a wide range of organizations throughout the Southeast and the nation.

The Chick-fil-A Peach Bowl Challenge is a significant contributor to the Chick-fil-A Peach Bowl’s overall charitable and scholarship donations, which total more than $19.5 million since 2002, making the Chick-fil-A Peach Bowl college football’s most charitable bowl game.

Competing teams will play a two-man scramble format over 18 holes using confirmed handicap adjustments. Schools will be paired for a shotgun start on the first nine holes and then re-paired, based on scores, and the round will continue with consecutive tee times for the second nine holes. Highlighted by four Dodd Trophy-winning coaches, five College Football Hall of Famers and three Heisman Trophy winners, click here to view all of the participating coaches.

The nation’s premier head coach and celebrity golf event will be held May 1-3 at the Reynolds Lake Oconee resort outside Atlanta. The tournament will be broadcast on ESPNU in August and December. Specific air dates will be announced this summer.

We’re thrilled to partner with Coach Kirby Smart, and are grateful for his dedication to our fight against childhood cancer.

Georgia Tech's Paul Johnson, left, talks to Auburn's Gus Malzahn during the 2015 Chick-fil-A Peach Bowl Challenge Round on the Oconee Course at Reynolds Plantation on Tuesday, April 28, 2015. (Chick-fil-A Peach Bowl/Abell Images/Todd Kirkland)

Georgia Tech’s Paul Johnson, left, talks to Auburn’s Gus Malzahn during the 2015 Chick-fil-A Peach Bowl Challenge Round on the Oconee Course at Reynolds Plantation on Tuesday, April 28, 2015. (Chick-fil-A Peach Bowl/Abell Images/Todd Kirkland)

 

Childhood Cancer Patient Robert appears on iHeartMedia’s 94.9 The Bull

For the past few years, iHeartMedia Atlanta has shown amazing support for CURE Childhood Cancer, and our families. This Spring is no exception! With the 22nd Annual Lauren’s Run just around the corner, Jason Pullman and Kristen Gates from 94.9 The Bull invited childhood cancer patient Robert, and his mother Kasie, into the studio to come on-air and share their story of Robert’s battle with cancer.

Below, listen to clips from Robert’s segment and check out some photos from the fun day.

 

Unending Passion and a Heart of Gold: Meet Judy Rubel

Screen Shot 2016-02-18 at 2.32.25 PMMention the name, Judy Rubel, to just about anyone who knows her and chances are their response will be, “She won’t take ‘No’ for an answer!”  Judy admits that’s true, but her feisty resolve has brought a wealth of help to CURE Childhood Cancer.

Judy entered the world of pediatric cancer when her granddaughter, Hannah, was diagnosed with neuroblastoma ten and a half years ago.  Hannah checked into Children’s Healthcare of Atlanta at Scottish Rite.

“The first visitor we had was from CURE,” said Judy.  “She had a basket of ‘necessities’ for my daughter and a lot of good advice.  She made us feel we were not alone.”

Judy has never forgotten that visit from CURE and has dedicated a major portion of her life to helping CURE and our mission to end childhood cancer.  Hannah has relapsed and is still undergoing treatment in Georgia, but Judy, who lives in Gadsden, Alabama, has spread the word about CURE in her hometown.

“I raise funds,” said Judy.  “I sponsor lunches and get others to sponsor lunches.  I do all I can to make people in my area aware of the need for research and to let them know what CURE does.”

Judy is constantly thinking up new ways to help.  Earlier this year, she approached the manager of her local Winn Dixie store about asking customers for donations.  Every Winn Dixie in the district participated, and the grocery store chain presented a check to CURE for $24,000.  In September, during Childhood Cancer Awareness month, Judy tied a gold ribbon on every tree in downtown Gadsden, and reportedly put a donation container in every store downtown and every branch of The Exchange Bank of Alabama.

CURE Advisory Board member, Ginger Kindred, met Judy when her son, Trenton, was diagnosed with cancer—the same day, the same diagnosis of neuroblastoma as Judy’s granddaughter, Hannah.  The two women bonded and are still good friends.

“I was blessed to have her loving on our Trenton as much as she did Hannah,” said Ginger.  “That’s just who she is.  She loved on all those kids on the floor.”

Ginger calls Judy a “Grandma-cologist” because Ginger says Judy “…will fight until her last breath to find a cure for neuroblastoma and all childhood cancer.”

CURE’s director of Patient and Family Services, Lisa Branch says Judy has “…the heart to find a cure and take care of families.”

“Judy calls me to check in on a regular basis and the call always includes ‘Do you need anything for the families?’  The most beautiful part of that question is that I know she really means it,” said Lisa.

As Hannah continues to battle cancer, Judy continues her efforts to raise money for research to save children’s lives.

“We have to speak for our kids,” Judy said.  When she thinks of the pain that cancer causes, Judy said she doesn’t cry, she gets mad and works.

“People ask me how I do what I do,” Judy said.  “I tell them, you can do what I do, just put a foot forward and do something.”

And this 71-year-old “Grandma-cologist has no plans to slow down any of her efforts for CURE.  She said she will work for CURE  “…for the rest of my life…forever.”

Parenting Through Illness

20057-868On October 17, 2015 CURE Childhood Cancer hosted a workshop for parents of children with cancer entitled “Parenting Through Illness.” Workshops like the one recently offered are extensions of CURE’s Partners in Caring program, which aims to address the psychosocial needs of families navigating the world of childhood cancer. This particular workshop focused on approaches to parenting a child with cancer during cancer treatment.

Led by Dr. Tiffany McNary of Georgia State University and Ginny Thompson from the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, parents learned the TEEL Method of interacting with their children. Using the TEEL Method technique Dr. McNary and Ginny coached parents to Track, Empathize, Encourage, and Limit-Set with their child. “The workshop provided skill sets to help with the day to day challenges that are associated with parenting a child with cancer,” said one parent. “I am so grateful to be a part of the class.”

Along with learning practical tools for parenting through illness, parents also had the opportunity to connect with other parents of children with cancer.  Through shared experiences and shared feelings, parents found a community of support. “It was a blessing to be able to share with other parents going through the same journey,” shared one mom. Another found comfort in “just being around other parents going through the same struggle.”

To close the workshop, parents were asked to write themselves an encouraging note on a postcard which will be mailed at a later date. Parents wrote words of encouragement to keep going, encouragement of a job well done, encouragement to see themselves and their efforts as enough.

For information about future workshops or about CURE’s Partners in Caring counseling program, please contact Karen McCarthy at karen@curechildhoodcancer.org.