Unlocking Potential Spring 2012

Unlocking Potential your support is the key

A special publication for supporters of the Kennedy Krieger Institute

Kennedy Krieger to Host Third Annual Camp S.O.A.R. in July Camp S.O.A.R. (Sibling Outdoor Adventure Retreat) empowers former patients and their siblings Photo by Rob McLean

For children, hospitals sometimes seem scary and hard to understand.

The kids who come to Kennedy Krieger are brave and work hard during treatment, so the Institute works just as hard to provide them with expert care and support. But it’s not just our patients who need a helping hand— their families need support, too, especially when it’s time for patients to transition to life at home. This transition can be especially tough on siblings, who may worry about or have difficulty reconnecting with their brother or sister, or even feel left out. That’s why Camp S.O.A.R. (Sibling Outdoor Adventure Retreat) was launched in 2010 with the goal of helping former patients and their siblings reconnect and have fun.

The second annual Camp S.O.A.R. gave former outpatients and their siblings time to reconnect in an exciting outdoor environment.

After the stress of hospitalization and the isolation that can come from time spent in therapy or at different schools, Camp S.O.A.R. gives kids a chance to just be young and have fun trying new things. At camp, Continued on page 2

Finding a Miracle for Megan Photo by Steve Parke

Family gives back and helps others touched by chromosome disorders

helpkids.kennedykrieger.org Vol. 9, Issue 1 • Spring 2012

Megan Miceli is a beautiful little girl. With her big blue eyes, strawberry blond ringlets, and the sweetest little grin, it’s easy to imagine she’s got her parents wrapped around her fingers. But it’s what Megan’s missing that makes her unique— she has an extremely rare disorder called gene microdeletion 15q13.3, which means that a tiny piece of chromosome 15 is absent from her DNA. It may seem odd that such a tiny thing could completely change Megan’s life and her family’s, but it has done just that.

The Miracle for Megan Foundation was formed to honor Megan Miceli, pictured above.

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Kennedy Krieger to Host Third Annual Camp S.O.A.R. in July Continued from cover

Photo by Eli

sa Delia

Photo by Elisa Delia

children with paralysis leave their wheelchairs at the shoreline and canoe across open water for the first time. Campers with motor skills difficulties choreograph and perform dances for the entire group. Brothers and sisters who have taken on a caregiver role have the chance to relax and just be a camp participant and friend to their sibling. “Camp S.O.A.R. gives kids an opportunity to come together as a family and just have fun and learn about each other in a new way,” says Stephanie Ramey, an occupational therapist at Kennedy Krieger’s International Center for Spinal Cord Injury and camp volunteer.

The only camp of its kind in Maryland, Camp S.O.A.R. provides the unique opportunity for children with special needs to have the same experiences as their siblings. “This doesn’t really exist anywhere else,” says Becky McClellan, a genetic counselor at the Institute’s Department of Neurogenetics and a volunteer at camp. “[The] camp allows children to reach their potential in a therapeutic and accepting environment,” adds Kelley Marcue, a certified therapeutic recreation therapist and the director of Camp S.O.A.R. “The weekend getaway helps highlight the strengths and abilities of all campers.”

But it’s not just the former patients and their siblings who benefit from camp. This weekend getaway provides the ideal opportunity for parents, who often are overwhelmed and exhausted, to enjoy a few days of respite.

Camp S.O.A.R. gives kids the chance to try new and different things.

Megan Mayforth, a senior clinical social worker at the Institute and camp volunteer, recalls that some of the campers’ parents admitted that they hadn’t had much time to themselves, and that they were happy to have a much-needed chance to relax and recharge.

Parents even receive a self-care bag from the camp staff when they drop off their kids. “It’s a small treat,” Mayforth says, “but it means a lot to them.” Mayforth adds that parents appreciate knowing they can trust the staff at Kennedy Krieger to take good care of their children. Camp counselors make sure the children are safe and having a good time.

Registered nurses assist with the medical needs of each camper, and a physician is on call at all times.

To keep costs low, Kennedy Krieger staff volunteer their time at the camp. They also host various fundraisers throughout the year, including comedy shows and basket raffles. Supporters such as the Finish Line Youth Foundation, Miriam Lodge, and the Build-A-Bear Workshop Bear Hugs Foundation have also given grants to ensure successful camp experiences.

Photo by Rob McLean

Kennedy Krieger is gearing up for the third year of Camp S.O.A.R., which has expanded and is welcoming outpatients for the first time in 2012. This year’s camp getaway is Olympicthemed and will be held July 20-22 at the Hashawha Environmental Center in Westminster, Md. For more information on how to contribute to or participate in Camp S.O.A.R., please contact Kelley Marcue at 443-923-2630 or marcue@kennedykrieger.org.

Camp S.O.A.R. participants and counselors.

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Your support is the key to unlocking a child’s potential.

Finding a Miracle for Megan The day of Megan’s diagnosis was filled with much emotion. While her parents, Amie and Nick, were relieved to have an answer to why Megan wasn’t reaching her developmental milestones, they were also saddened to learn that there was no treatment for the disorder. But they weren’t willing to give up without a fight, so on that very same day, they decided to form a foundation in their daughter’s honor. “Since there is no cure, this was our way of turning bad into good,” says Amie. The Miracle for Megan Foundation is dedicated to providing funding for research and therapy for genetic disorders at places like the Kennedy Krieger Institute, and it also provides support to families of children with genetic disorders who need medical care and education.

Photo by Mandie Lurz

Continued from cover

Dr. Ali Fatemi (far right) and Nick, Amie, and Megan Miceli pose with Leila Jamal (far left), a genetic counselor whose position at Kennedy Krieger was funded by the Miracle for Megan Foundation.

To help raise money, Nick’s sister, Katie Lepley, organized the first Miles for Megan 5K and Family Fun Walk, which took place in 2010 on the day before Halloween. Megan herself kicked off the event with a few hard-earned steps— while dressed in a pink bunny costume. Miles for Megan has now become an annual tradition organized by Katie—even despite rain, snow, and sleet at the 2011 event, the foundation’s loyal supporters donned their sneakers and braved the elements, all in the name of helping children with genetic disorders.

Photo by Lindsay Parks Photography

The Micelis are grateful for what the staff at Kennedy Krieger has done for Megan. “They have been absolutely amazing,” says Amie. “I have never met a better group of doctors and therapists—they have done wonders for Megan. If it wasn’t for the staff at Kennedy Krieger who care so much for her, I don’t know where she would be.” The Micelis’ gratitude truly shows. To date, the Miracle for Megan Foundation has contributed $35,000 to Kennedy Krieger in support of Dr. Ali Fatemi’s neurological research and the Institute’s physical therapy programs. They’re also helping in other ways, such as providing medical supplies to families and patients through their scholarship fund, and even arranging for Santa to visit children at the Institute.

“Amie and Nick’s hard work and dedication is making a difference,” says Tarra Dendinger, a physical therapist who worked with Megan when she first came to Kennedy Krieger. “Their generous donations have allowed the physical therapy center to purchase new equipment, and patients are benefitting from the foundation’s scholarship program. It’s a wonderful gift to help another family in a similar situation.”

Megan Miceli, with the help of her physical therapist Megha Patel, kicks off the 2nd Annual Miles for Megan 5K and Family Fun Walk.

If you would like to learn more about organizing a fundraiser such as the Miles for Megan 5K and Family Fun Walk, please visit www.events.kennedykrieger.org or contact Kennedy Krieger’s Office of Development at 443-923-7300.

Learn more at www.helpkids.kennedykrieger.org.

VOLUNTEERING

Morgan Stanley Employees Volunteer at Kennedy Krieger Photo by Jaime Ball

When you think of Kennedy Krieger, what comes to mind? For a group of about 40 Morgan Stanley employees who volunteered at the Institute last June, the name “Kennedy Krieger” brings to mind friends made and a job well done. The volunteers’ time, in addition to a $5,000 grant from Morgan Stanley, helped Kennedy Krieger better care for the children in the Institute’s inpatient unit. According to a Morgan Stanley spokesperson, volunteering “is consistent with one of the Firm’s long-standing values: to serve the communities in which our employees live and work.”

Kennedy Krieger board member Robin Harris (left) and a Morgan Stanley volunteer play Bingo with the children.

During their time at Kennedy Krieger, the volunteers took part in sensitivity training in which they gained a deeper awareness and understanding of developmental disabilities, and they assisted with developing sewing patterns and other projects that patients would use in future therapies. Perhaps the most meaningful work they did was also the most fun—the volunteers spent time playing Bingo and Uno with the children. Such a simple thing can make a tremendous difference—a fact that was evident in the smiles on those children’s (and volunteers’) faces.

As Morgan Stanley’s employees discovered, volunteering at Kennedy Krieger is more than a chance to help the community. It’s also an opportunity to meet amazing people, learn something new, and connect with the Institute and the children it serves in a deep and meaningful way.

We hope you’ll consider lending a helping hand, too! For more information about how to volunteer, please contact Kennedy Krieger’s Guest Relations department at 443-923-2640.

Kennedy Krieger Institute Celebrates 75 Years Take a walk back in time with us. Visit our 75th anniversary website at www.kennedykrieger.org/75th-anniversary, where you’ll find an interactive timeline of the Institute’s history, historic photos, video interviews with patients and former staff, and a venue for you to share your own experiences and memories.

75th Anniversary Commemorative Gifts To commemorate our 75th anniversary, Kennedy Krieger is offering a special selection of limited edition keepsakes and jewelry. With each purchase, you’ll be helping children and adolescents with disorders of the brain, spinal cord, and musculoskeletal system. Please visit the virtual gift shop at helpkids.kennedykrieger.org/gift-shop.

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Your support is the key to unlocking a child’s potential.