September 2013
Transcription
September 2013
NON-PROFIT ORG. U.S. POSTAGE PAID BUFFALO, NEW YORK PERMIT NO. 61 ROSWELL PARK CANCER INSTITUTE Elm & Carlton Streets • Buffalo, NY 14263 Return Service Requested for a SEPT 2013 Alden Middle School Student Proves Tougher Than Cancer w/o cancer Read & Pass SHARE this publication with your COLLEAGUES and STUDENTS! Sets out to show other patients that they are, too Erin Matthewson, left Thank you for joining the fight at The Ride For Roswell 2013! Erin Matthewson, 11, knows life is hard. The Alden Middle School student has twice battled a rare cancer in her eye tissue, called rhabdomyosarcoma. Despite her time in the hospital, Erin is determined to show other cancer patients that they, too, can overcome life’s obstacles. A Christmas gift from her mother, Nancy, gave Erin just the idea she needed. The gift was a gold-colored bracelet with the simple inscription “Life is tough, but I am tougher.” Inspired by the quote, Erin plans to hand out these bracelets to other pediatric patients so they, too, realize they are tougher than their diagnosis. “It means a lot because they go through a lot of the same things I went through,” Erin said. “They need inspiration because the road can get bumpy.” In order to raise money to purchase the bracelets, both Alden Middle School and Nichols Middle School, where Erin’s mother works, held fundraisers. The two schools raised more than $1,400 for the project, which is enough to buy nearly 200 bracelets. Erin said she is still in the process of ordering bracelets but plans to distribute them soon. Kissmas Bash is Right Around the Corner! Before we know it, the snow will be falling and Yroswell will be setting up for another year at Kiss 98.5’s annual “The quote on the bracelet has inspired me because life is tough,” Erin said. “There are many obstacles in life, but you’re tougher than them. You can beat anything that’s in your way.” Congratulations to A.J. Walczak who raised $9,555 as our top youth fundraiser! means Childhood Cancer Awareness Month is here! Turn inside to learn how you can help promote awareness this September. #GoldForKids WHAT'S INSIDE? LEARNING: Are Adolescents Overlooked in Clinical Trials? GIVING: Bandits, Bisons … and Bald Heads! COPING: Warming Mind, Body and Spirit with the Gift of a Blanket Nearly 700 youth riders and 250 youth volunteers helped make this year’s Ride a huge success, with more than $3.8 million raised in the fight against cancer. Kissmas Bash concert. How will we rock the arena for a world without cancer this year? Stay tuned to Yroswell’s Thanks again, and we hope to see you next year at Ride Weekend 2014, Facebook page or Yroswell.com! June 27 & 28! 26904 (8/13) www.yroswell.com facebook.com/yroswell learning visit yroswell.com/learning IN PLAIN TERMS: CLINICAL TRIAL Are Adolescents Overlooked in Clinical Trials? Dr. Lynda Beaupin, pediatric oncologist at Roswell Park, meets with a patient. Evidence suggests that enrollment in clinical trials can yield better outcomes for the patients who participate. In fact, almost all standard cancer therapies used today got their start in a clinical trial. Why then are adolescents, or those ages 15 to 19, less likely than younger pediatric patients to take advantage of these options? We need to improve how we communicate with adolescent patients and how to engage them in their care. “ “Clinical trials have played a significant role in the increased survival rates of both pediatric and adult oncology patients,” explained Martin Brecher, MD, The Waldemar J. Kaminski chair in pediatrics at Roswell Park and chief of the hematology/ oncology division at Women and Children’s Hospital of Buffalo. “The improvement in cure rates for adolescent patients has not been as dramatic. Adolescents sometimes ‘fall through the cracks’ of pediatric and adult oncology, resulting in less access to clinical trials. We are looking to bridge this gap.” Roswell Park’s Lynda Beaupin, MD, pediatric oncologist and assistant professor of oncology, is working with the Centers for Disease Control and Prevention (CDC) to understand this trend. Her research has identified a few possible underlying issues, including: • Low referral rates. Adolescent patients are less likely to be referred to cancer centers that participate in National Cancer Institute (NCI) - sponsored pediatric clinical trials. • Limited availability. Very few trials are explicitly designed to address the unique aspects of adolescent and young adult patients or disease. A clinical trial is a type of research study that evaluates the effectiveness and safety of new medical approaches. These studies can test new medications, diagnostics, therapy and medical devices. Most treatments people use today are the result of clinical trials. Clinical trials can help to treat, find and diagnose cancer, or manage cancer symptoms. Clinical trials are usually available for all stages of cancer. Each clinical trial has a principal investigator who is in charge of the trial. The principle investigator is usually a doctor, and this person is responsible for creating the protocol, or plan, for the trial. For more information about the many clinical trials currently offered at Roswell Park, visit RoswellPark.org/clinical-trials. SEPTEMBER IS National Childhood Cancer Awareness Month Go #GoldForKids! As you and your students get back into the groove of a new school year, help us spread awareness by going Gold For Kids! Get your whole class—or even school— to wear gold in September and share a picture on the Roswell Park Facebook page at Facebook.com/RoswellPark or on any social network of choice with the hashtag #GoldForKids. Learn more about #GoldForKids at RoswellPark.org/awareness or by searching #GoldForKids on Facebook, Twitter or Pinterest! Childhood Cancers Cancer is the leading cause of death by disease among U.S. children between infancy and age 14 leukemias other childhood cancers Mortality rates for pediatric cancers have declined by more than Leukemias account for approximately 34 percent of all childhood cancers over the past 30 years Part of the solution, according to Dr. Beaupin, is better communication. “We need to improve how we communicate with adolescent patients and how to engage them in their care,” Dr. Beaupin said. “We also need to continue to raise awareness about cancers among adolescents within the community so that they may be referred appropriately.” At Roswell Park, adolescent patients have access to clinical trials through both pediatric and adult cooperative groups. In addition, the Adolescent and Young Adult (AYA) Program strives to increase awareness about available resources. To read more about Dr. Lynda Beaupin’s research, visit the AYA category of the Cancer Talk blog at RoswellPark.org/CancerTalk. Approximately 11,630 children in the U.S. will be diagnosed with cancer in 2013 80 percent of children with cancer now survive for a Cure on July 28 The J.P. McGowan Concert at Roswell Park arch benefited lung cancer rese including drummer ez, nke Mo ss Bra the d and feature g treated for bein is who Tyler Midgley (left), 18, at Roswell Park. ia kem Leu tic blas pho Lym Acute ez also played at the Tyler and the Brass Monke ) Kickoff event in Teens Living with Cancer (TLC the Buffalo TLC of ch laun the ting July, celebra . chapter at Roswell Park survival years other childhood cancers & central nervous system Brain and central nervous system cancers account for 27 percent of all childhood cancers or more Sources: American Cancer Society (ACS) and National Cancer Institute (NCI) giving visit yroswell.com/giving Bandits, Bisons … and Bald Heads! Goin’ Bald For Bucks Participants Get VIP Treatment from Local Sports Figures Twenty lucky students across Western New York had their heads shaved by Buffalo Bandits and Buffalo Bisons players as part of Roswell Park’s Goin’ Bald for Bucks program this year. The players shaved heads, signed autographs and took pictures with Bald for Bucks participants. “I love the program because the kids do such a great job raising money for something that has affected either someone they know or know about,” said Luke Wiles, forward for the Bandits. “Smiling is contagious, and raising money for people who need it makes me smile so giving back is a top priority.” For Bucks shaves the head of a Bald Bandits Forward Luke Wiles more ted visi th Smi Bandit Billy Dee participant. He and fellow s like Casey iser dra fun top the of e som than 10 schools, including dle. entary and Sweet Home Mid Middle School, West Elem Want in on the fun? Go to baldforbucks.org and get started today! rans of the tarina are vete Brooke and Ka alk, raising nearly $20,000 W Bosom Buddiesfive years of participation. over their Friends Supporting Buddies Orchard Park Teens Honor Memory of Loved One at Annual Bosom Buddies Walk Bosom Buddies Walk 2013 benefiting the WNY Breast Resource Center Saturday, September 14 East Aurora Ice Rink - new location! BosomBuddiesWalk.com Did you know that one in two men and one in three women will have cancer in their lifetime? Cancer’s effects are felt not only by those diagnosed with the disease, but by 2012-2013 Highlights their families, friends and loved ones as well. Thank you to everyone who helped make the 2012-2013 Goin’ Bald Brooke Driscoll and Katarina Ulsrud are all too familiar with this. Seven years ago school year a great success. With more than 50 schools raising more Brooke’s mother, Lisa, lost her battle with breast cancer. To honor her memory, the two than $550,000, we are making a difference in the fight against cancer. friends decided to get involved in the annual Bosom Buddies Walk for Roswell Park. Congrats to all of your milestone efforts! “We wanted to find a way to remember her and give back,” said Katarina. Join us for a candle lighting ceremony in honor or memory of your loved ones. Top Inaugural School: West Seneca West Middle School Most Improved School: West Elementary School 1 # Lebro’s Marks 25th Anniversary of Fall Classic Race On September 21, Lebro’s Restaurant in Getzville will hold the 25th annual Lebro’s Fall Classic Race. The race is part of the WNY Fabulous 5K Racing Series and includes a 1-mile kids run. Held appropriately during pediatric cancer awareness month, all proceeds from the event support Carly’s Club Top 5 Fundraisers: For the past five years, the Orchard Park teens have made it their goal to ensure that no one in Western New York has to deal with breast cancer alone. To date, they have raised almost $20,000 to support the WNY Breast Resource Center at Roswell Park. The center helps patients and families navigate their cancer journey 2 The brother sister team of Jonathan and Megan Stypa from Heim Middle School $10,185 4 Whitney Bishop from Victor High School $4,500 # 3 # # 5 # from diagnosis and treatment to survivorship by providing a wealth of information and support to all those affected by cancer. In 2012, the center provided $23,000 worth of free wigs to more than 200 patients. The best part: the center is free and open to Amy Williams from Sweet Home Middle School over $3,035 everyone, regardless of where you or your loved one receives treatment. “We love to help people. Being able to raise this money for such a great cause makes us feel Meghan Dahlgren from Lake Shore High School $3,026 good,” said Katarina. at Roswell Park. Lebro’s has donated all funds raised from the Lebro’s Fall Join Brooke and Katarina at this year’s Bosom Buddies Classic Race to Carly’s Club since 2002, when Carly’s Club founder, Carly Walk on September 14 at the East Aurora Ice Rink. You Collard Cottone, lost her battle to medulloblastoma. can sign up at BosomBuddiesWalk.org. To learn more, visit lebrosrestaurant.com or call (716) 688-0404. Register online at score-this.com. WGRZ's Heather Ly, who is serving as the honorary chair of the Bosom Buddies Walk: "The cancer cause is near and dear to me, and I want to help in any way possible." Tree of Hope Lighting Festivities Friday, December 6, 2013 4:30 pm - 6:30 pm coping visit yroswell.com/coping GET INVOLVED! Warming Mind, Body and Spirit with the Gift of a Blanket Volunteers create dozens of comfy fleece blankets to be donated to Roswell Park in memory of former patient, Emily Belanger Garrant. For more information on Erica Foreman at foreman.erica@yahoo.com or search for “Kids in a Blanket” on Facebook. www.BosomBuddiesWalk.org jay.josker@roswellpark.org “Kids in a Blanket” held annually in memory of Emily Belanger Garrant “My best friend passed away on March 1, 2005.” “Kids in a Blanket” contact BOSOM BUDDIES WALK Erica Foreman, now 35, will never forget the difficult time that followed the passing of her friend, Emily Belanger Garrant, just eight years ago at the young age of 24. Holding dear to her memory, Erica looked for a way to remember Emily and give back to Roswell Park Cancer Institute (RPCI), where Emily had been a patient. In December of 2005, Erica organized an event called “Kids in a Blanket” to do just that. “At the time it was kind of trendy to make the fleece-tie blankets,” Erica said. “One thing (Emily) always told me when she was going through chemo was that she was always really cold. I just started thinking blankets might be comforting to some of the families and some of the children who were going through cancer treatments like Emily had.” (From left to right) Michael Belanger, Erica Foreman, Ramona Belanger and Katy Watrous organize the "Kids in a Blanket" event each year. Erica said the event started small, with about a dozen friends and family members meeting at her mother’s house. With the support of Emily’s family, the event has grown exponentially in the years since and has moved to RPCI. “As Emily’s father, I am forever touched and impressed by the continued support we get from friends and family,” said Michael Belanger. “I am sure Emily is proud that we can carry on her spirit of compassion, hope, humor, family, her love of life and, mostly, sharing.” Erica, the Belanger family and many other volunteers now donate around 100 blankets every December to RPCI. The group creates blankets in a wide variety of colors and patterns to appeal to all of the pediatric patients. “They go in to the gift closet and there’s a whole wall of all these blankets all tied up, and they get to pick one,” Erica said. “It’s just nice to hear that the blankets are appreciated and that they’re helping people. That’s our overall goal— to help people through treatment and provide a little comfort.” CARLY’S CLUB www.CarlysClub.org robin.hace@roswellpark.org Instructor Sue Hess, PhD, demonstrates a Healing Touch technique on program volunteer, Molly Gold. Healing Touch manipulates the body's energy fields in order to treat patients' emotional, mental and physical symptoms. Easing Cancer Symptoms Through Love and Compassion Roswell Park pilots heart-centered therapy program with pediatric patients In the fight against cancer, Roswell Park “Healing Touch is a little bit different than Cancer Institute (RPCI) has an ever-growing other energy modalities in that there is an arsenal of treatments. Recently, two RPCI emphasis on the practitioner coming from employees introduced a heart-centered a place of love and compassion for another approach, called Healing Touch, which human being,” Dr. Hess said. “So, what better focuses on the mind and spirit of the patient, way than to try this with family members and as well as physical ailments. extended family?” Thanks to a Quality of Life grant from the Aubrey Murphy, along with her son, Sullivan, 8, Roswell Park Alliance Foundation, Sue an acute myeloid leukemia patient, attended Hess, PhD, an RPCI grants coordinator, the eight-session program. According to and Lynda Beaupin, MD, assistant professor Aubrey, the program connected patients with of oncology, held a pilot program in the their parents or caregivers on a different level. CARLY’S CROSSING www.CarlysCrossing.com robin.hace@roswellpark.org GOIN’ BALD FOR BUCK$ www.BaldForBucks.org GoinBaldForBucks@roswellpark.org THE RIDE FOR ROSWELL www.RideForRoswell.org RideForRoswell@roswellpark.org TEAM CURE www.TeamCure.com julia.harvey@roswellpark.org TEAM CURE CHALLENGE www.TeamCureChallenge.com julia.harvey@roswellpark.org YROSWELL www.Yroswell.com yroswell@roswellpark.org complementary therapy over the winter. TLC Program Update “In this situation, sometimes you can’t do a lot By moving one’s hands around a patient’s for the person who’s going through it,” Aubrey TLC, Teens Living with Cancer, celebrated its Buffalo debut on July 25! Teen cancer survivors body or lightly touching the patient, the body’s said. “You have to allow the doctors to do in Western New York lit up the night at Hoyt Lake, danced to live music and popped dye-filled energy field can be manipulated in order what it is that they need to do. So, I was able balloons while getting to know each other and the TLC program. In September, this peer-to-peer to manage pain and other cancer-related to help Sullivan and do something myself as support resource at Roswell Park will have a master make-up class donated by Sephora and a symptoms, Dr. Hess said. In the pilot program, opposed to having to rely on the doctors.” party in Brian Moorman’s PUNT Foundation suite at the Bills season opener. Want to be a part email emily.marciniak@roswellpark.org to talk about ways you can help! ? Green Dr. Hess instructed a group of pediatric patients, parents and caregivers, 30 people in Continue reading about the Healing Touch all, in the use and practice of Healing Touch. pilot session at Yroswell.com/Coping. of making this program a success in Buffalo? Contact Emily Marciniak at (716) 845- 4977 or The opening of the Roswell Park Teens Living with Cancer Center was celebrated on July 25, 2013. Going Send your email address to yroswell@roswellpark.org to receive Yroswell News by email.
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