Montgomery Blair High School Career Day Continues Tradition of Inspiring Students

Dozens of high school students from Silver Spring, Maryland got the inside scoop on careers in healthcare, thanks to MedStar medical professionals who recently visited for Career Day.

Montgomery Blair High School and MedStar Georgetown University Hospital have partnered on the popular event for the last six years. Over the school’s lunch period, seven panelists took turns outlining their own career paths and imparting advice to students.

“Know your vision. Aim high. Use it to improve the world,” said Shirisha Avadhanula, MD, an endocrinologist at MedStar Georgetown.

Students interested in specific areas of study also enjoyed small group ‘Q & A’ sessions with the professionals, including Matthew Cooper, MD, director of Kidney and Pancreas Tranplantation at the MedStar Georgetown Transplant Institute.

“We chose a career that helps people. We’re energized that the next generation is interested in doing what we do,” Cooper said.

Cooper and Avadhanula were joined by Michael Manning, RN, BSN; Sameer Mehta, PT, DPT, SCS, CSCS; Stephanie Cone, MOTR/L; Meghan Wilkinson, LAT, ATC,CSCS; and Jonathan Everett, Community Relations Coordinator at MedStar Family Choice.

2018 Montgomery Blair High School Career Day 2018 Montgomery Blair High School Career Day 2018 Montgomery Blair High School Career Day

 

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Transplant Patient Starts off New Year with a Better Night’s Sleep and Gratitude for NPR Listeners after National Broadcast

Creasey being interviewedMedStar Georgetown kidney transplant recipient Constance Creasey learned about the kindness of strangers after a national radio broadcast featured her story, along with an interview with Dr. Matthew Cooper, MD, medical director of the Kidney Pancreas Transplant program at the MedStar Georgetown Transplant Institute.

NPR national medical correspondent Richard Harris compiled a story about Medicare coverage of anti-rejection drugs that expires after three years, but continues to pay for dialysis and even a new transplant. Dr. Cooper commented that this is a policy he believes needs to change.

To add patient perspective NPR interviewed Creasey, age 60 of Washington, D.C. who mentioned that sleeping on a bed is a luxury she can’t afford because she has to save money for her anti-rejection medications. When NPR’s Morning Edition  listeners heard the story on December 22, many wanted to donate and began to contact NPR and MGUH Media Relations to find out how.

A woman from Virginia bought Creasey a bed right after the holidays, while donated gift cards from all over the country provided her with sheets and blankets. Another woman from Illinois started a funding page for Creasey; some listeners donated to the MGTI's patient assistance fund that helps patients like Creasey in similar situations.  

“I was overwhelmed and in total disbelief,” said Creasey. “I didn’t feel like I deserved it.  I was just trying to bring awareness to this issue for other people like myself.” 

Creasey spent 11 years on dialysis after her kidney failed and received a transplant in 2015. Thankfully, the surgery was a success. However, to prevent rejection, Creasey will have to take medication for the rest of her life. She is becoming increasingly concerned about how she is going to pay for her medication after Medicare stops covering the costs in 2018. 

Creasey has been “truly grateful” for what people have given her since the story on NPR. She is enjoying her brand new bed, headboard and frame with sheets, a comforter and some curtains. She is happy to finally make her room a little more like home.  Creaseys says she can now turn her heat down because sleeping on the floor was cold.

“I’m starting off my new year with more faith in people. This experience has touched my heart and I can’t thank everyone enough, “Creasey said.

-Shannon McCarthy

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New Medical/Surgical Pavilion at MedStar Georgetown Moves Another Step Forward

(Washington, D.C) The Old Georgetown Board (OGB) of the U.S. Commission of Fine Arts has given concept approval to plans for a new medical/surgical pavilion at MedStar Georgetown University Hospital. 

“We are thrilled to receive this important endorsement of this much needed project,” said Michael Sachtleben, president of MedStar Georgetown University Hospital.  “On behalf of the patients who will benefit from this pavilion, which also includes emergency care, we appreciate the collaboration and support among our neighbors and the OGB to help us bring this much needed, state-of-the-art facility to fruition.”

In addition to the OGB, several community organizations involved with the Georgetown Community Partnership including the ANC3D, ANC2E, the Citizens Association of Georgetown, the Burleith Citizens Association, the Foxhall Community Citizens Association and Georgetown University are also behind the plans.

The 477,000 square-foot pavilion will include larger space for emergency care with direct access to the latest in imaging technology, 156 new private patient rooms, 32 new operating rooms and three levels of new underground parking.

“We now look forward to advancing this important project through the next series of required approvals,” Sachtleben said.

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Study: Cancer Drug Restores Important Brain Dopamine in Parkinson’s Patients

WASHINGTON — A small phase I study provides molecular evidence that an FDA-approved drug for leukemia significantly increased brain dopamine and reduced toxic proteins linked to disease progression in patients with Parkinson’s disease or dementia with Lewy bodies. Dopamine is the brain chemical (neurotransmitter) lost as a result of death of dopamine-producing neurons in these neurodegenerative diseases. 

Researchers from Georgetown University Medical Center (GUMC), say the findings, described in the Journal of Parkinson’s Disease, support improved clinical outcomes observed and first reported at the Society for Neuroscience annual meeting in October 2015.

The study tested nilotinib taken daily for six months. A much smaller dose of nilotinib (150 or 300 mg once daily) was used compared to the dose for chronic myelogenous leukemia (300-400 mg twice daily). Twelve patients were enrolled in the clinical trial — one patient withdrew due to an adverse event. Researchers say the drug appears to be safe and well tolerated in the remaining 11 participants who completed the study.

In addition to safety, the researchers also examined biological markers in the blood and cerebral spinal fluid as well as cognitive, motor and non-motor improvement. They found significant signs that nilotinib may provide benefit for patients with these neurodegenerative diseases.

“These results need to be viewed with caution and further validated in larger placebo controlled trials, because this study was small, the patients were very different from each other, and there was no placebo,” says the study’s senior investigator, Charbel Moussa, MD, PhD, scientific and clinical research director of the GUMC Translational Neurotherpeutics Program.

Among the biomarker findings were that:

  • The level of the dopamine metabolite homovanillic acid — an indicator that dopamine is being produced — steadily doubled, even with the loss of most dopamine neurons. Most study participants were able to stop using, or reduce their use of, dopamine replacement therapies;
  • The level of the Parkinson's related oxidative stress marker DJ-1 — an indicator that dopamine-producing neurons are dying — was reduced more than 50 percent after niltonib treatment; and
  • The levels of cell death markers (NSE, S100B and tau) were significantly reduced in cerebrospinal fluid (CSF) suggesting reduced neuronal cell death.

In addition, Moussa adds that it appears nilotinib attenuated the loss of CSF alpha-synuclein, a toxic protein that accumulates within neurons, resulting in reduced CSF levels in both Parkinson’s disease and dementia with Lewy bodies.

The researchers also said that all 11 patients who tolerated the drug reported meaningful clinical improvements. All patients were at mid-advanced stages of Parkinsonism and they all had mild to severe cognitive impairment.

“Patients progressively improved in motor and cognitive functions as long as they were on the drug — despite the decreased use of dopamine replacement therapies in those participants with Parkinson’s and dementia with Lewy bodies,” says the study’s lead author, Fernando Pagan, MD, medical director of the GUMC Translational Neurotherpeutics Program and director of the Movement Disorders Program at MedStar Georgetown University Hospital.

But three months after withdrawal of the drug, participants returned to the same reduced cognitive and motor state they had before the study began, Pagan adds.

Some serious side effects were reported including one patient who withdrew at week four of treatment due to heart attack and three incidents of urinary tract infection or pneumonia. The researchers say these incidents are not uncommon in this patient population, and additional studies are needed to determine if the adverse events are related to use of nilotinib.

“Long term safety of nilotinib is a priority, so it is important that further studies be conducted to determine the safest and most effective dose in Parkinson’s, says Pagan.

The researchers designed the clinical trial to translate several notable observations in the laboratory. The preclinical studies, led by Moussa, showed that nilotinib, a tyrosine kinase inhibitor, effectively penetrates the blood-brain barrier and destroys toxic proteins that build up in Parkinson’s disease and dementia by turning on the “garbage disposal machinery” inside neurons.

Their published studies also showed nilotinib increases the levels of the dopamine neurotransmitter — the chemical lost as a result of neuronal destruction due to toxic protein accumulation — and improves motor and cognitive outcomes in Parkinson’s and Alzheimer’s disease animal models.

“Our hope is to clarify the benefits of nilotinib to patients in a much larger and well controlled study. This was a very promising start,” Moussa says. “If these data hold out in further studies, nilotinib would be the most important treatment for Parkinsonism since the discovery of Levodopa almost 50 years ago.”  

He adds, “Additionally, if we can validate nilotinib effects on cognition in upcoming larger and placebo controlled trials, this drug could become one of the first treatments for dementia with Lewy bodies, which has no cure, and possibly other dementias.”

Two randomized, placebo-controlled phase II clinical trials are planned for summer/fall in Parkinson’s and Alzheimer’s diseases. The Translational Neurotherpeutics Program is also planning a small trial in ALS (Lou Gherig’s disease).

According to Novartis, the cost (as of Oct. 2015) of nilotinib for the treatment of CML was about $10,360 a month for 800 mg daily. The dose used in this study was lower —  150 and 300 mg daily.

The phase I study received philanthropic funding and was supported by the Georgetown-Howard Universities Center for Clinical and Translational Science.

Moussa is listed as an inventor on a patent application that Georgetown University filed related to the use of nilotinib and other tyrosine kinase inhibitors for the treatment of neurodegenerative diseases. 

Study co-authors include Ellen H. Valadez, MD; Yasar Tores-Yaghi, MD; Reversa R. Mills, MD; Barbara M., Wilmarth, NP; Hellen Howard, RN; Connell Dunn; Alexis Carlson; Sean L. Rogers, MD, PhD;  and Ramsey (Drew) Falconer, MD; from the National Parkinson’s Foundation Center for Excellence, the Translational Neurotherapeutics Program, and the Movement Disorders Program at the MedStar Georgetown University Hospital; Michaeline Hebron, and Xu Huang, and Jaeil Ahn, PhD, Georgetown University Medical Center.

The researchers represent the MedStar Georgetown Movement Disorders Program, GUMC’s Translational Neurotherapeutics Program, the Laboratory for Dementia and Parkinsonism, the Georgetown-Howard Universities Center for Clinical and Translational Science Clinical Research and the department of biostatistics.

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Charbel Moussa, MD, PhD and Fernando Pagan, MD
Charbel Moussa, MD, PhD and Fernando Pagan, MD

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MedStar Georgetown University Hospital Obtains Certificate of Need for New Medical/Surgical Pavilion

Need-based assessment supports hospital’s plans

(April 5, 2016) Washington, D.C.  MedStar Georgetown University Hospital has successfully obtained a Certificate of Need from the State Health Planning and Development Agency (SHPDA) for a new state-of-the-art medical/surgical building on the hospital’s campus. The approval demonstrates public need for the new facility and means MedStar Georgetown has crossed an important threshold in the development process and is now a significant step closer to bringing the new medical/surgical pavilion to realization.

The $560 million medical/surgical pavilion will house a new Emergency Department, larger operating rooms and 156 private patient rooms in an unparalleled, modern setting that will set the standard for patient care.  The project will also resolve current infrastructure that is aging and at maximum capacity.

As a governmentally-regulated and community-based healthcare assessment, the Certificate of Need process affirms that a proposed medical development supports and furthers public healthcare needs. The District of Columbia requires healthcare providers to detail the proposed structure, services provided, capital expenditures and capacity, among other things, before establishing a new healthcare facility. The approval of this CON signifies that MedStar Georgetown’s plans for a medical/surgical pavilion mirror the District’s public health needs and greatly advances the project in the approval process. 

“We welcome this decision by members of the State Health Planning and Development Agency that took into account the recommendations of both the Project Review Committee and Statewide Health Coordinating Council,” said Michael Sachtleben, President, MedStar Georgetown University Hospital. “We are pleased that there was clear agreement with the need to improve and update our healthcare facility in order to continue to provide state-of-the-art healthcare services.  We are more confident than ever that this project is what’s right and needed for the patients we serve and to support ongoing excellence in both medical education and research with our University partner.”

This new facility is vital to MedStar Georgetown’s overall ability to continue to deliver the high quality healthcare the community has relied on for over 100 years and is committed to providing for decades to come.

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MedStar Medical Professionals Talk Careers with High School Students

 

Compassion the Theme at Montgomery Blair High School’s Fourth Annual Career Day.

“People want to know you care, before they will care how much you know,” words of career advice from Matthew Cooper, M.D.,  director of Kidney and Pancreas Transplantation at the MedStar Georgetown Transplant Institute, to a room of 200 high school students hanging on every word.

“It is the best and I love that it’s a life-changing experience,” said Dr. Cooper of his career performing life-saving kidney transplants.


PanelistsA panel of six MedStar Health medical professionals visited Montgomery Blair High School in Silver Spring, Maryland on March 4, 2016 - the fourth year of a partnership between MedStar and the high school known for its science and technology curricula.

The panelists’ specialties ranged from physical therapy, radiation medicine, occupational therapy, transplant surgery and speech pathology.

Participants shared their career journeys, as students gained an understanding of the required number of years in education and training for each specialty and just how hard they’ll need to work.  But aside from talk about SATs, GREs, GPAs and MCAT scores, the common theme that kept coming from each panelist - providing great care in medicine takes compassion. The importance of simply caring.Blair HS Career Day

You have to have a heart,” said Menghes Ogbamicael, a registered radiologic technologist and radiology clinical instructor at MedStar Georgetown. “You must be compassionate because you could meet your patient at the worst time of their life.”

Others echoed this message.

In response to one student’s question about stress and delivering bad news to patients, MedStar Georgetown physical therapist Sameer Mehta explained that the role of a medical professional is to walk with patients through some of their most difficult and challenging physical and emotional struggles.  


“This is a hands-on career,” said Mehta, “and it’s the best!”

Talking to the students“Yes, you have to care and you have to enjoy working with people,” said Stephanie Cone, an occupational therapist at MedStar Georgetown.

After grabbing the students’ attention with a loud, robotic-sounding, electrical voice device during her introduction, MedStar Georgetown speech pathologist Eliza Peoples quickly explained her role in caring for patients.

“I focus on helping someone learn how to communicate better even if they no longer have an actual voice,” said Peoples.

 “Our students have really been exited for this!” said John Haigh, Montgomery Blair’s STEM Academy director. “MedStar Health Career Day means that they are going to learn about their future options both academically and financially. Also, the importance of getting good grades message hits home in many ways because, we as teachers can tell them over and over, but when actual professionals say the same thing, our students realize in a new way that they need to do well.”

By the end of the session, Blair students were challenged to decide which career was truly the best, as each panelist said they had “the best job in the world!”

MedStar Georgetown Hosts Ribbon-Cutting Ceremony for New Pediatric Mobile Clinic, Gives Toys to Local Children

 

Pediatric Mobile Clinic

“We’ve been coming here since we were babies,” said Demarco Corbett, 10, and his friend Navaeh Edwards, 12, holding a big pair of scissors about to snip a big blue silk ribbon.

Naveah and Demarco, patients who visit the KIDS Mobile Medical Clinic/Ronald McDonald Care Mobile, cut the ribbon at MedStar Georgetown’s ceremony, which officially opened the new KIDS Mobile Medical Clinic/Ronald McDonald Care Mobile at the King Greenleaf Recreation Center on Dec. 8. The Ronald McDonald House Charities of Greater Washington, D.C. provided the care mobile, a new state-of-the-art pediatric mobile clinic that will serve patients in Wards 4, 6, 7 and 8.

“Because of the support of our partners, our staff can be more efficient, have a reliable office and better serve our patients in a comfortable environment,” said Matthew Levy, MD, division chief of Community Pediatrics at MedStar Georgetown.

Dr. Levy and team gave tours of the care mobile before and after the ceremony. The vehicle measures 500 square feet with six hydraulic bump-outs to hold larger exam tables and an expanded lab and waiting area. Some of the primary care services on the KIDS Mobile Medical Clinic/Ronald McDonald Care Mobile include well-visits, immunizations, fluoride varnish, nutritional counseling, sick visits, ophthalmology and mental health services.

“I look forward to seeing this newest KIDS Mobile Medical Clinic/Ronald McDonald Care Mobile setting up shop in neighborhoods across the District,” said Congresswoman Eleanor Holmes Norton (D-DC). “Every child, regardless of income or circumstance, deserves quality health care. I am grateful to MedStar Georgetown University Hospital.”

Pediatric Mobile Clinic 6Congresswoman Norton was one of the speakers at the ribbon-cutting ceremony who expressed her gratitude to all who serve “those who need it the most” with critical pediatric care. Other speakers, like Councilmember Charles Allen of Ward 6, echoed her remarks.

“The Southwest community is very grateful,” said Councilmember Allen. “The ability to have a clinic roll up, matters in our neighborhood. We see it as a big difference because sometimes you need care to come to the homes.”

Councilmember Allen highlighted the Southwest community’s large proportion of disparities and lack of health centers in the neighborhood. Mike Sachtleben, chief operating officer of MedStar Georgetown, agreed on the need for special care and provided insight into MedStar Georgetown’s commitment to proving the cura personalis approach to care in Southwest D.C.

“We are a proud member of the D.C. community,” he said. “The new mobile clinic means more space, advanced equipment and better care for children in our community!”

Pediatric Mobile ClinicMedStar Georgetown has served Washington, D.C. with mobile care since 1992. The new KIDS Mobile Medical Clinic/Ronald McDonald Care Mobile is the program’s fourth mobile unit. The staff shared that a few generations of patients have now come through the mobile clinic, which helps its team develop closer relationships with patient families.

“I found the mobile clinic at a very difficult time in life,” said Naveah’s mother, Tracy Edwards. “While the staff’s main focus is on children first, they also have a lot of resources to help parents be able to put their kids first. I’m so thankful for the personalized care that Dr. Levy and his team have shown us! I’ve always been very impressed!”

According to Dr. Levy, his team will continue to focus on the five pillars of health: physical health, mental health, oral health, nutritional health and the social determinants of health.

“We know our families very well, and they have been so special to us for many years,” said Dr. Levy. “For us, it’s about being able to build programs to help people. That’s what we do.”

Following the ceremony, the mobile care staff distributed toy gifts, which were collected during a recent holiday toy drive at MedStar Georgetown.

When it was Navaeh’s turn to select a gift, she chose a bracelet-making box. Damarco was excited about his air hockey table.

“As far as I’m concerned, kids come first,” said Congresswoman Norton (D-DC), “especially at this time of the year.”

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MedStar Georgetown Files Certificate of Need Application for New State-of-the-Art Medical and Surgical Pavilion

 

Georgetown_University_Hospital_-_Washington,_D.C.

Washington, D.C., October 7, 2015 – MedStar Georgetown University Hospital has submitted a Certificate of Need (CON) application to the District of Columbia State Health Planning and Development Agency (SHPDA) to move forward with a new $560 million state-of-the-art medical and surgical pavilion to be constructed next to the existing hospital.

The 477,000 square foot pavilion will house a new and modernized Emergency Department with the latest high-tech treatment bays, new operating rooms, surgical and critical care services, new intensive care beds with the latest IT capability, a rooftop helipad and the most advanced imaging services dedicated for emergency and critical care patients. Five levels of the building will be above ground and there will be three levels of underground parking. The project also allows for improved traffic patterns, landscaping and the creation of more green space on the hospital campus.

“This certificate of need is the next step in our journey to completing this much needed medical and surgical pavilion on the Georgetown campus,” said Richard Goldberg, MD, President, MedStar Georgetown University Hospital.  “Our goal is to build a medical and surgical pavilion that will meet the needs of our patients, families, staff and community not only today but for years into the future.”

MedStar Georgetown treats a number of complex diseases with services that are not offered at other area hospitals.  For example, the MedStar Georgetown Transplant Institute (MGTI) is one of the largest liver and kidney transplant centers in the region with outcomes that exceed the national average. Our well-established kidney transplant program has extensive experience in transplanting even highly-sensitized patients using state-of-the-art technology and is home to an active and growing paired kidney exchange program, giving patients who are otherwise untransplantable, the option of receiving a kidney from a living donor.   The MGTI’s Transplant Center for Children is the only facility of its type in the Washington, D.C. region. 

Among our Centers of Excellence are national designations in neurosciences and cancer. MedStar Georgetown is the only National Parkinson Foundation Designated Center of Excellence in the District of Columbia. The Lombardi Comprehensive Cancer Center is the only accredited center designated as such by the National Cancer Institute (NCI) in the D.C. area and offers not only a variety of standard oncology treatments but also advanced treatments for complex and difficult to treat cancers, and access to a long list of the latest clinical trials. The Bone Marrow and Stem Cell Transplant Program is the only adult academic program of its kind in the Washington, D.C. area. Patients have access to life-saving treatment options not otherwise available in our region.

To build the new pavilion, MedStar Georgetown has assembled an expert team with extensive local and national experience with conception and construction of similar large projects.  The Clark Construction Group has been providing preconstruction services. Trammell Crow Company (TCC) has been providing development management services, HKS Architects is leading the design of the building’s interior and Shalom Baranes Associates (SBA) is the exterior design architect.  These firms have unmatched experience in the development, design and construction of healthcare and other large-scale projects.

In addition to constructing the new facility, the existing building will undergo renovations to certain medical and surgical services to achieve more efficient overall hospital operations.

“This exciting new medical and surgical pavilion represents one of the most significant reinvestments in our organization and is absolutely critical to our ability to continue to provide high level, world class care to a community that has depended on us for decades. We continue to work actively and collaboratively with the community and with Georgetown University through the Georgetown Community Partnership so that the result is a top-rate facility that meets a shared vision for the future,” Goldberg said.

The positive economic impact to the District of Columbia is estimated at $1.2 billion.

The targeted completion date is 2020.

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First Summer Camp in North America for Youth Impacted by Huntington’s Disease

 

Young People with Connections to Devastating Illness Enjoy a Break and a Common Bond

 

canoeing 2
Campers at HDYO's first summer camp in North America enjoy canoeing on the Wicomico River in Newburg, MD.

The setting was the beautiful great outdoors of southern Maryland at a waterfront summer camp with all the familiar trappings; games, hikes and campfires.  But the 40-plus campers, ages 15 to 23, who came from as far as Alaska and Canada for a week this August share a bond as unique as it is poignant.  These young people all know what it’s like to be affected by a disease that is devastating for their families to experience, challenging for doctors to treat, and for which, as yet, there is no cure.

“Camp is like an escape for most of us, but, for me, it’s really been more of a pause from everything,” said 17-year-old Lizzy, a local high-school student. “I’m having an amazing time! Here, we are connecting with people who know what you’re going through and relating on a level that I’ve never been able to relate to before. Our differences – our race, our looks, our interests – don’t matter here. You can just be yourself because we trust each other. It’s like our own little family of support.”

HDYO learning sessionThe Huntington’s Disease Youth Organization (HDYO), supported by MedStar Georgetown University Hospital, The Huntington’s Disease Society of America (HDSA) and Huntington’s Society of Canada (HSC), offered the camp, the first of its scale and size to be offered in North America. The camp’s main goal is to have fun and to learn to live positively in the face of difficult situations.

Lizzy is one example of the many other resilient campers at North American HD Youth Camp. She has seen her sister and mother live with Huntington’s disease (HD), a degenerative neurological disease with difficult symptoms that can affect someone physically, emotionally and mentally. These symptoms force many young people to mature faster than some of their peers, assuming more responsibilities in care giving, finances, and, in some cases, changing plans for education.

 
“Camp is a great opportunity to give kids a chance to be kids again,” said Chandler Swope, LICSW and director of Youth Services at HDYO. “This is an opportunity for kids to meet other kids in this similar situation and not have to be an educator. They can make new friends, walk away with some practical tools, but mostly, have fun.”  

The camp staff also provided access to experts and resources that help young people learn how to live their life in a more optimistic way. They want to encourage young people to continue to dream and see their goals as achievable, despite the many HD-related obstacles they could encounter in their family life.  The camp’s daily agenda involved sessions on care giving, communications and relationships, grief and loss, genetic testing, research, bereavement and more.  They could round out their days with swimming, a ropes course, archery, canoeing, team building and paddle boating.

lizzy with bow and arrow“Archery was like a dream come true! I’ve always wanted to be like Katniss,” said Lizzy, a few minutes after her ringtone sounded the Hunger Games theme music. She smiled and posed like she was holding a bow and arrow.

 Each activity and learning session seemed to trigger another story, a deeper conversation and the eventual exchanging of phone numbers and social media contact information. By the second day, Lizzy already had new friends to follow on InstaGram and Snapchat. The staff, anticipating the campers’ engagement on social media, created a Facebook page to be a “safe space” for keeping in touch and reaching out for help.

“There is a great need for a camp like this! The heavy demands of HD symptoms can burden family members, so it is important to have an intentionally structured program that can provide social support and coping skills for young people impacted by HD,” said Karen Anderson, MD, director of the Huntington Disease Care, Education and Research Center (HDCERC), a joint endeavor of Georgetown University Medical Center and MedStar Georgetown University Hospital. “HD can cause behavioral changes including drastic mood swings, which could mean that, on one morning, an affected parent could appear ‘normal’ and, on a different day, the parent could be frustrated or angry. It is difficult for family members to gauge when the changes will occur in a loved one.”

ropes course 1One of the most memorable sessions for campers occurred around a campfire. Campers wrote their biggest fears on a piece of paper. When it was their turn, they shared their fear with the group and tossed the paper into the fire. It was an emotional evening for some, but it was also a big step forward to living positively, according to the camp staff.

The night after the bonfire, Lizzy was the first to wake up in her cabin. She said she wanted to go somewhere to think, so she walked down to the camp shore of the Wicomico River.

“It felt so peaceful listening to the waves of the river crashing against the rocks and to be able to see the sunrise,” said Lizzy. “I’m not sure why, but this morning is one of my highlights. I don’t get to do this in the city a lot.”

The camp experience encouraged attendees to remember to take time to “pause” from any situation at home. Swope said the self-awareness focus at camp helped campers determine what each individual needs to stay positive. By focusing the idea of support at an individual level, campers learned how they cope and how to best ask for help. Swope hopes the campers leave feeling more supported and with a better understanding of what it means to live with HD in their family.

“These events make a huge difference in the lives of these young people.  You see it instantly,” said Swope. “We all have a lasting bond because of a common connection.”

MedStar Georgetown Community Mourns Death of Lenny B. Robinson, the Caped Crusader who Brought Hope and Fun to Sick Children

(Washington, D.C.) August 18, 2015 - The MedStar Georgetown University Hospital community is saddened by the sudden death of Lenny B. Robinson whose Batman crusade brightened the lives of hundreds of seriously ill children here for ten years.

Batman 2“Thanks to the DC-based Hope for Henry Foundation, each year, Lenny arrived at the hospital in his Batmobile for our annual ‘Superhero Party’ not only dressed in an unbelievable Batman outfit, but exuding that Batman persona,” said Aziza Shad, MD, chief, Pediatric Hematology/Oncology at MedStar Georgetown. “He was a superhero who brought a special level of kindness to children and their families who were enduring some of the greatest challenges of their lives.”

 Just this past March, Lenny reminded children that they are the true superheroes and he encouraged them to stay strong and fight hard.

“We had one child who had a particularly difficult course of treatment of his cancer who loved Batman and loved dressing up as Batman,” said Dr. Shad. “On that day when he was able to welcome Batman to the hospital and follow him through the halls as he met other sick children, the child’s hardships were wiped away.  Lenny always brought hope, happiness and joy.”

“Lenny truly understood what it means to be a kid in the hospital and he used his greatest super power – his kind heart – to help these children through some really hard times, “said Jessica Abrams, CCLS, Certified Child Life Specialist at MedStar Georgetown. “I loved being able to tell our kids that Batman was coming to the hospital, because a visit from someone as special as Batman is often the thing that gives a child the motivation to get through a tough hospitalization or at the very least put a smile on the face of a patient who is not feeling well. He spread so much joy and happiness to so many people during all of the years that he came to MedStar Georgetown and I cannot say enough wonderful things about our Batman.”

When Batman, aka Lenny, strode through the halls of Georgetown spreading his superhero strength you knew you were in the midst of a mighty potent force of inspiration. That personality, that positive energy that encouraged us all to stand up to challenges great and small, will be missed by everyone.

Abrams said, “I cannot help but think that he must be out there somewhere still protecting and watching over our kids – just the way Batman would do.”

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