CureSearch was introduced to Sophie May Sewell at both the Kansas City and Dallas CureSearch Walks this year. Now 2, Sophie was just 20 months old when her parents found a bump on her back. Doctors assured her family that it was nothing, just connective tissue, and not to worry. Just to be sure, they ordered an MRI. The news was not as positive as they had hoped. Doctors determined that the bump was a neuroblastoma tumor the size of a baseball, and it was located in her chest cavity.
Thus, Sophie’s journey with cancer began in June, 2012. Sophie’s grandmother, Monica May, moved closer to her family to be able to help with everyday tasks and the care of Sophie. She wanted to do whatever she could to make the treatment process easier on her son and granddaughter. “I wouldn’t trade the last 10 months with Sophie May for anything. It’s meant the world to me to be here and be able to help in any small way possible,” says Monica. “I just wish the reason I was able to be here wasn’t because she had cancer.” Since then, she has had 6 rounds of stem cell transplant, 12 rounds of immunotherapy treatment.
Long tradition of helping the community continues with Jakefest Golf Outings
Kiewit Infrastructure Co. has a long history of charity, whether it’s through the United Way community and holiday events, or annual Golf Outings. Kiewit is an employee-owned company that takes care of its own. Formed in 1884, the company has grown into a Fortune 500 construction, mining, and engineering powerhouse that works hard to give back to the community and employees. This year, Kiewit broke the $1 million giving mark to CureSearch for Children’s Cancer.
“We are so grateful for Kiewit’s onging support,” says Laura Thrall, CureSearch president and CEO. “Their generosity, and that of their employees, has had a positive impact on rhabdomyosarcoma research in the hopes that one day children like Jake won’t lose their lives to this devastating disease.”
When Jake Koenigs, the son of an employee, passed away from rhabdomyosarcoma, a rare form of childhood cancer in 2006, Kiewit’s Eastern District wanted to help. Jake’s father Harry says, “When we realized that Jake wasn’t going to survive, we wanted to find a way to give back to an organization that was working towards finding a cure. We felt that CureSearch was that organization and my coworkers at Kiewit agreed.” In 2007, the Jacob Koenigs Memorial Golf Tournament, known simply as Jakefest, was held to raise funds for CureSearch for Children’s Cancer.
Nasopharyngeal carcinoma (NPC) is the most common cancer originating in the nasopharynx, the area behind the nose where the nasal passages and auditory tubes join the remainder of the upper respiratory tract. It is known that the majority of cases are associated with Epstein-Barr virus (EBV), one of the most common human viruses, most notably known as the cause of mono. While not continuing to make a person sick, once contracted, EBV always lives in a person’s body. In some cases, EBV can lead to cancers like NPC or lymphoma. Chrystal Louis, MD a researcher at Baylor College of Medicine plans to study alternative ways to treat NPC cases caused by EBV, in order to one day try to reduce treatment side effects.
Most commonly found in pediatric patients between 10 -17 years old, NPC often goes undiagnosed until it reaches an advanced stage and has spread to the lymph nodes. Due to its location, surgical removal is not an effective treatment option, so doctors rely on high doses of radiation and chemotherapy. Because the high-dose radiation treatments are to the face and neck, the side effects of current treatment can leave patients with long term affects such as hearing loss, dental issues, and chronic dry mouth.
This September 15-16, CureSearch will host a 1.5 day conference in Washington, DC. During the conference the 2013 CureSearch Acceleration Grants will be awarded by Laura Thrall, President and CEO or CureSearch.
Top scientists in the field will discuss topics such as The Changing Face of Pediatric Oncology- Clinical Trials in the 21st Century, The Future of Cellular Therapy in Managing Pediatric Cancer, What is on the Horizon for Metastatic and Drug Resistant Disease?.
Join CureSearch as we explore The Future of Pediatric Oncology: From Targets to Treatment. For more information, click here.
When Vincenza was 9 months old, her parents knew something was wrong. She was experiencing flu-like symptoms, but nothing seemed to help. One day, her abdomen became severely distended and she was rushed to the hospital. After many tests, doctors informed her family that Vincenza had stage I hepatoblastoma, and that they had to start treatment immediately. With very few options available, her family decided to move forward with surgery. During the procedure, Vincenza’s tumor ruptured and her cancer diagnosis was elevated to stage 3. A better treatment was needed, and her parents eventually found a unique form of chemotherapy being studied at Memorial Sloan Kettering hospital in NY.
Disappointed by the lack of options available because Vincenza’s cancer was rare, and very little research was being funded, Tim decided to start the Baby V. Fund at CureSearch. The fund raises money to advance research on liver tumors and improve treatments, as well as giving the people around them a way to make a difference.
“I chose direct funding from our efforts to CureSearch because it became apparent to me that it is one of the few organizations addressing rare cancers and seeking to improve treatments for children. It is important to our family to ensure no one has to lose their child to cancer.”
Vincenza responded well to treatment and is now cancer free, but she and her family know that sometimes others are not so fortunate. Now 9-years-old, Vincenza is a spit fire who is passionate about her foundation’s cause. She tells everyone about the importance of funding children’s cancer research. Though Vincenza has been marked by cancer permanently, she doesn’t let it stop her from enjoying life. She and her family want others to be given the opportunity to live the life they dream of.
Tell us your story and how you are fighting back against children’s cancer by commenting below.
Patients, survivors, and families ask Congress to help children battle cancer
More than 150 childhood cancer patients, survivors, and their families were on Capitol Hill on Tuesday, June 18 to ask Congress to continue to support initiatives that can improve research, treatment and outcomes for children with cancer. As part of the second annual Childhood Cancer Action Day event, the Alliance for Childhood Cancer – of which CureSearch is a member – coordinated this day in an effort to advance important legislation that will benefit the 13,500 children newly diagnosed with cancer each year and the 360,000 survivors of childhood cancer in the U.S.
“Families from 31 states, each of whom is armed with deeply personal experiences that inspired them to travel to Washington, came to town to ensure that Congress understands the importance of supporting children with cancer and their families,” said Karen McKinley, PsyD, LCSW, co-chair of the Alliance for Childhood Cancer. In all, advocates ranging in age from 4-70 met with their Congressional Representatives and asked them to support the following bills:
- H.R. 460, Patients Access to Treatments Act
This legislation would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs. For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50% of the price of a specialty drug (e.g. for a $7,000 drug like Gleevec, $3,500 patient out of pocket), HR 460 would require the insurer to charge no more than $30 for specialty drugs.
- Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act
Developed by Senator Jack Reed (D-RI) and Rep. Chris Van Hollen (D-MD), this bill would expand research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development and research of therapeutics necessary to treat children with cancer.
- H.R. 2058, Childhood Cancer Survivors’ Quality of Life Act
Introduced in the House by Rep. Jackie Speier (D-CA) on May 20, 2013, this legislation will provide resources for research and survivorship programs to improve the quality of life for all childhood cancer survivors, increase access to the long-term comprehensive health care services they need, and enhance understanding of the late effects of their childhood diseases and cancer treatments.
No Frills Supermarket and Bag n Save continue tradition of helping in the community
No Frills Supermarket and Bag n Save are local icons in Omaha, Nebraska. This family owned company has a long traditional of helping those in need; they were thrilled to support the CureSearch Walk again this year.
In 2012, the company raised $10,000 through the sale of CureCards, $1 paper cards that act as a visual reminder of those affected by cancer, at 10 of their local stores. This year, they expanded their support to 31 stores, raising $19,200 to help fund innovative and targeted research aimed at advancing treatments and the search for cures.
The employees became personally involved in the campaign, often reminding fellow employees to ask customers to make a donation. Walk committee members acted as secret shoppers, visiting the stores with prizes for employees who asked them to make a donation to CureSearch.