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For many parents, September means back-to-school sales and the end of long summer days. But for Kimberly Mitchell, administrative associate in Children's Hospital Boston's Bone Health Program, and hundreds of thousands of others like her, this month holds a deeper meaning. September is National Sickle Cell Awareness Month, a time to reflect on the children and the adults whose lives have been affected by Sickle Cell Disease. Mitchell's 16-year-old daughter, Tynaya Frasier, has the disease, one of the most common genetic diseases in the country, which primarily affects African Americans, Latinos and those with Mediterranean heritage.
Every year, about 1,000 babies are born in the United States with this inherited blood disease, which causes some blood cells to become sickle-shaped. Healthy red blood cells are smooth and can easily squeeze through tiny blood vessels to carry oxygen to all parts of the body. Sickle-shaped cells are stiff and sticky and tend to get stuck in blood vessels. Blocked blood vessels can cause pain, organ damage and serious bacterial infections.
During awareness month, Matthew Heeney, MD, director of Children's Hematology Clinic and clinical director of the Sickle Cell Program, and his interdisciplinary team, are continuing to educate families about Sickle Cell disease and remain hopeful that the diligent efforts of researchers will lead to better treatments and, hopefully, a cure. Children's currently sees 200 infants, children and young adults who have the disease.
Mitchell, who has worked at Children's since 2003, often visits patients with Sickle Cell disease to comfort them and share what she's learned. At home, she uses massage, heating pads, warm baths and soothing music to effectively manage her daughter's pain, which usually occurs at night. "As a parent, you need to be a strong advocate for your kids," she says. "I tell parents to read as much as they can about the disease and ask the doctor lots of questions."
Some of the major challenges with this disease, says Cassie Ryan, RN, MPH, hematology nurse coordinator, are the lack of awareness in the community and the lack of minority blood donors. "Blood transfusions are important for Sickle Cell patients," says Ryan. "And we don't get enough minority blood donors. If we increased blood donations, we would increase the chance of positive matches." To help spread the word, employees from Children's Sickle Cell program will participate in Martha Eliot Health Center's summer health fair on Sept. 13 and attend a community event held by the Community Sickle Cell Support Group on Sept. 6. They are also submitting a proposal to the Center for Families/Social Work Jane Addams Fund to fund Children's next Sickle Cell Education Day.
To learn about Children's stem cell research, which could improve the care of sickle cell patients, visit Nova ScienceNow's Stem Cell Breakthrough at pbs.org/wgbh/nova/sciencenow/0305/03.html.
Between the Lions, a PBS puppet show designed to promote reading, came to Children's and entertained patients and families with read-alouds and a performance in the Patient Entertainment Center last month.
Researchers from the Laboratories of Cognitive Neuroscience (LCN) have joined up with the Living Laboratory at the Museum of Science as part of the museum's efforts to make the science behind cognitive development more accessible to families. Along with researchers from Harvard and MIT, LCN researchers go to the museum's Living Laboratory each week to gather data for their studies and help parents understand how children learn about the world. Currently, Ben Balas, PhD, Developmental Medicine, and Margaret Moulson, PhD, Developmental Medicine, are investigating how children become experts in face-perception.
The task is simple and fun: Children are shown either a monkey or a human face and then asked to pick out which one they saw from a pair of the same type of face. Balas and Moulson expect that children will be good at recognizing human faces, but poor at recognizing monkey faces because they have little experience seeing them. The study is part of a larger face-processing research program at the LCN, led by Charles Nelson, PhD, research director of the Developmental Medicine.
Why study face-processing? In terms of human social communication, faces provide a wealth of information about other individuals: their identity, age and emotional state. Successful social interactions rely upon the ability to interpret this information from faces. In gaining a better understanding of how children's experiences with faces shape the development of face-processing skills, researchers aim to apply this knowledge to help children who have had atypical visual experiences early in life, such as children born with cataracts, and those with developmental disorders, such as autism.
Balas and Moulson are also piloting a Living Laboratory in the museum's Human Body Connection exhibition by studying a family of cotton-top tamarin monkeys. "We ask the kids if they can tell the monkeys apart and, if so, whether that's based on their facial features," says Moulson. "It provides a great concrete example to help kids and parents understand our research." They are currently in the Discovery Center from 2:30 to 4:45 p.m. on Tuesdays and in the Human Body Connection from 10 a.m. to 1 p.m. on Fridays. The LCN will soon be launching more Living Laboratory studies at the Museum of Science. For more information about studies at the LCN vistit childrenshopsital.org/research/brainworks.
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Top row: physical therapists Melinda Hogan and Katie Olson
Bottom row: patients Emily Doyon, Jodi Pinkham, Jennessa Seaman and Taylor Mullen |
A group of patients attended a Red Sox game as part of to Jason Varitek's Tek's 33s, a Children's program founded by Sox star Jason Varitek and his wife, Karen, that gives patients and their families the opportunity to come to Fenway before the gates open, meet Varitek on the field, watch batting practice and enjoy the game.
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Bob Magner (right), grand prize winner of the JN Philips Quality Performer of the Month contest |
JN Philips Auto Glass and 890 ESPN Radio Boston announced Bob Magner, 17-year Children's volunteer on 10 East, as the grand prize winner of the JN Philips Quality Performer of the Month contest, which recognizes individuals who go above and beyond to make a difference in the lives of others in their communities. Magner was selected as the recipient of the award after being nominated for his volunteer work by a colleague at McSweeney & Ricci Insurance Agency in Scituate.
As the grand prize winner, Magner and guest (his nephew) were flown to Los Angeles in July, where they walked the red carpet and attended the ESPY Awards, which were hosted by Justin Timberlake. "For me, being able to spend my time with and get to know these kids and their families is an honor," he says. "I love what I do." And it shows. Magner volunteers on 10 East every Sunday and has logged more than 5,600 hours as a volunteer.
When Magner initially signed up to volunteer, he made a six-month commitment. But he liked it so much that he decided to volunteer year after year. In addition to volunteering his Sundays, Manger also takes on the role as Children's Santa Claus every Christmas morning and participates in Miles for Miracles to raise money for the hospital.
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Tom Mulligan, blood donor of the month |
Congratulations to the Children's Blood Donor of the Month for September: Tom Mulligan.
Mulligan began donating in December of 2000 when his son was being treated in the cardiac Intensive Care Unit at Children's. After being encouraged by his sister, a regular platelet donor at the center, Mulligan decided to give platelets because "it's better to donate every two weeks than every eight weeks," he says.
With six children at home and one more on the way, Tom enjoys donating and getting in some relaxation at the same time. Donating platelets takes about two hours, but each chair has a TV, and donors can watch movies from the center's library or bring their own from home. Eight years and 24 gallons since his first donation (that's almost 200 pints!); Mulligan continues to visit the Blood Donor Center every other Tuesday evening. Some patients need one transfusion a day, and Mulligan plays an important role in ensuring that these patients never have to go without.
If you're interested in giving platelets or would like more information on donating blood, call 5-6677.
Champions earn prizes of all sizes
This winter, Boston's five sports teams and top business leaders will come together once again to support children seeking the biggest prize of all: happy, healthy lives. Celebrate kids' fighting spirits at Champions for Children's, a dinner and auction benefitting Children's. Join us Tuesday, December 2, 5:30 to 9:30 p.m. Tickets begin at $1,500 each. For more information contact Keri Campiola at ext. 5-0969 or keri.campiola@chtrust.org.
Open Enrollment
Human Resources would like to remind employees that 2009 is just a few months away, which means annual enrollment is just around the corner. Look for your enrollment kits in the mail and the benefits fair in October.
Open Meetings
Tuesday, September 16 at 11 a.m., and Friday, September 19 at 8:30 a.m., are the quarterly open meetings in Enders Auditorium. Guest speakers are Josh Greenberg, director of Government Relations, and Laurie Cammisa, vice president of Child Advocacy. Refreshments will be served. These sessions will also be available via Breeze Webconferencing.
Annual recipe contest
It's time to dig out your favorite family recipe and the story behind it for the annual Season of Hope Recipe Challenge. The challenge starts on September 15, so watch Small Talk and the intranet for details.
Children's Family Day at the zoo
The annual employee summer event, Children's Family Day at the Zoo, will take place September 6 at the Franklin Park Zoo. Doors open at 10 a.m.
Ice cream party
The annual Employee Appreciation Ice Cream Party will be held in the PEC and the Children's Way shuttle area September 10, 1 to 4 p.m., and again in the PEC from 10:30 p.m. to midnight. There will be ice cream events for the weekend staff, as well as celebrations at MEHC, Waltham and the satellite locations.
Martha Eliot Health Center's health fair
The annual Martha Eliot Health Center (MEHC) health fair will be held September 13, 11 a.m. to 2 p.m. in the parking lot of MEHC. This year's theme is Healthy Families, Healthy Communities. The rain date is September 20. For more information, contact Tevonne Ellis at ext. 4-3427.
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