Champions of Change

Champions of Change Blog

  • Creating a Global Alliance for Sharing of Genomic and Clinical Data

    Posted by David Altshuler on June 20, 2013 at 5:11 PM EDT

    David Altshuler

    David Altshuler is being honored as a Champion of Change for the vision he has demonstrated and for his commitment to open science.

    Working together with over 70 leading healthcare, research, and disease advocacy organizations (involving collaborators in over 40 countries), my colleagues and I have begun to form a global alliance to enable responsible sharing of genomic and clinical data.

    We are motivated by the view that a new era is opening in the science of genomics and its application to medicine.  The cost of genome sequencing has recently fallen one million fold.  Just a few years ago, only a handful of human genomes had been sequenced; today there are many tens of thousands of sequenced genomes, and it is widely expected that in the coming years millions of people will choose to have their genome sequenced for research, clinical, or personal use. The public interest will be best served if we work together to develop and promulgate open standards (both technical and regulatory) that make it possible to effectively and responsibly share and interpret this wealth of information.

    The ability to collect and analyze large amounts of genomic and clinical data presents a tremendous opportunity to learn about underlying causes of cancer, inherited and infectious diseases, and individual responses to drugs.  Moreover, for patients with cancer, and rare inherited diseases, genome sequencing is already becoming a powerful tool for diagnosis and decisions about therapy.  

    We realize that discussions about sharing large amounts of personal data naturally raise important questions about ethics and privacy. Accordingly, we have committed to work together to study and share perspectives on ethics, regulation and privacy.  We are committed to the principle that each individual has the right to decide whether and how broadly to share their personal health information. Our technical and regulatory solutions must support and enable these personal decisions.

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  • For Peace and Safety

    Posted by Debra Boudreaux on June 20, 2013 at 8:57 AM EDT

    Master Shih Cheng Yen, Tzu Chi Foundation is being honored as a Champion of Change for the leadership they demonstrated in their involvement in response and recovery efforts following Hurricane Sandy.

    Growing up in a small town in Taichung County, Dharma Master Cheng Yen saw at an early age the cruelties of war and the transience of life which propelled her to seek the out the answers to life and death, to why life is so transient and where then lies its true meaning?

    It was in 1966, when Dharma Master Cheng Yen was visiting a patient at a small local clinic that she saw not just suffering, but the helplessness of those in the clinic. One of the patients who was suffering from labor complications, had to be carried by her family for eight hours from their mountain village, but when they arrived at the clinic, they did not have NT$8,000 (then US$200), the required fee; and so, the family could only carry her back untreated. Hearing this, Dharma Master Cheng Yen was overwhelmed with sorrow; she was reminded of her own helplessness in the wake of suffering and impermanence, that as an impoverished monastic barely supporting herself, what could she possibly do to help these poor people?

    A short time later, three Catholic nuns visited Dharma Master Cheng Yen, and they had a discussion on the teachings of their respective religions. When Dharma Master Cheng Yen explained that Buddhism teaches love and compassion for all living beings, the nuns commented: Why have we not seen Buddhists doing good works for the society, such as setting up nursing homes, orphanages, and hospitals? She saw the fragility of life and the world which surrounded, but instead of looking the at impermanence with pessimistic nihilism, Dharma Master Cheng Yen, taking the advice and wisdom from her Catholic sisters, established Tzu Chi.

    Tzu Chi, meaning “compassion and relief,” actively engages in international disaster relief and environmental protection, devotedly promotes humanistic values and community volunteerism, and has established one of the world’s largest bone marrow donor registries. It was with the four major missions of charity, medicine, education, and humanistic culture that Tzu Chi was established and holds sacred in our responsibility for our fellow man. Started in 1966 by Venerable Dharma Master Cheng Yen and from its first 30 donors—housewives who saved two cents from their grocery money each day to help the poor—Tzu Chi now has the capacity to extend our charge and abilities internationally. Now we send our volunteers to various locations affected by natural disaster and help the communities rebuild. We have helped build schools in countries such as Haiti when it was ravaged by the earthquake in 2004, we have built community clinics in different parts of the world, providing medical care to the underserved in the community, and we frequently work with schools, helping students develop positive character traits of kindness, trustworthiness, and integrity.  And through our years of experience in providing relief to the various locations around the world, through what we have seen during times of calamities, it is in the most tenuous hours that the spirit, courage, and kindness of man that shines the brightest.

    This was what we saw when Hurricane Sandy struck the east coast. While delivering hot food, warm blankets, and cash aid to the affected districts of New York City, we were reminded of the same sorrow caused by the 2010 earthquake in Haiti, and yet, we were also reminded of that same enduring strength, the same one we saw in New Orleans, 2004 and in Boston where after finishing the marathon, runners ran back 2 miles to donate blood. Our volunteers, who come from all over the nation to show their love and provide aid, saw that it was the collaboration and dedication of all groups and individuals that truly helped our nation shine through. This resilience of the people and the groups involved in relief can only be attributed to the contagious nature of human compassion; that one act of kindness and compassion will sprout another and inspire many more; that in times of darkness, it is when heroes, like those running towards the bomb blast in Boston to help, are created; and that it is with compassionate relief, or “compassion and relief,” which is what Tzu Chi means, that truly reinforces our bonds of unity.

    Charity work takes us to places of suffering, and it is in these places of suffering, where man is at his most vulnerable, that bodhisattvas, or enlightened beings and saints, arise in response to the suffering. Our world is impermanent, and because of the fleeting nature of our existence, we should at every moment do more good for the world; only by doing good can our society become peaceful and safe. With that, we give our sincerest prayers and blessings to the victims of the Waco explosion and Boston marathon bombing.

    Dharma Master Cheng Yen, a Buddhist nun from Taiwan, founded the Tzu Chi Foundation in 1966. The foundation is an international humanitarian nonprofit organization that aspires to help the needy with love and inspire compassion in the wealthy. Tzu Chi responded to Hurricane Sandy in late 2012, serving almost 60,000 people in over 25 of the most severe disaster areas in New York and New Jersey.

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  • Providing a Safe Haven

    Posted by Carolina Salguero on June 20, 2013 at 8:54 AM EDT

    PortSide NewYork is being honored as a Champion of Change for the leadership they demonstrated in their involvement in response and recovery efforts following Hurricane Sandy.

    PortSide NewYork is a non-profit organization based in Red Hook, Brooklyn. Our diverse programs relate to water issues, and waterfront history and contemporary events.  We focus on the BlueSpace the water part of the waterfront, to help New York City make better use of its extraordinary waterways. 

    PortSide NewYork’s Sandy story has two parts, one about our home in the water, and one about our community service ashore. 

    Our first Sandy priority was to protect the MARY A. WHALEN, a coastal oil tanker that serves as our home, our offices, and a floating event space and museum. She was listed on the National Register of Historic Places just days before Sandy.  Built in 1938, she is 172 feet long and weighs 613 gross tons.  At her size, she could do a lot of damage if she broke loose; by saving her, we also saved the property of others.

    The PortSide team worked for five days preparing for the storm – moving the ship to a more secure location, clearing decks, arranging for volunteer crew – while arranging for weather service updates from Weeks Marine and other mariners.  As the storm hit NYC on Monday, we learned that a 12’ surge was expected. The two crew aboard, PortSide Director Carolina Salguero and volunteer Museum Curator Peter Rothenberg, tied together a series of docklines and attached them to a pier 265 feet away to prevent the tanker from riding up onto the pier.

    After protecting the ship, Salguero and Rothenberg came ashore on Wednesday. Prior to founding PortSide, Salguero, who had worked as a photojournalist covering foreign areas of unrest and disaster, as well as 9/11 in NYC, immediately recognized that Red Hook was devastated. We decided to help.

    The vicissitudes of PortSide’s real estate story prepared us to respond. PortSide has been seeking a permanent home since our 2005 business plan while operating as a pop-up, both on the water and on land.  We know how to rapidly identify opportunities and forge agreements.

    On Thursday, Salguero began assessing what other groups were already doing, and where PortSide could help. She identified a storefront at 351 Van Brunt Street, on a slight rise, as one of the few Red Hook buildings still with power. She then contacted the occupants, Realty Collective and the art gallery subtenant Gallery Brooklyn, and secured permission to use it. 

    By morning, it was decided that facilitating aid applications would be PortSide’s first offering. PortSide gathered volunteers off the street to get six computer workstations, office furniture and equipment from PortSide’s offices on the tanker. These were set up at “351” so Sandy victims could apply to FEMA, file insurance claims, use email. The internet was down, so Rothenberg ran a Clear wireless hub up a tree for two days until a PortSide contact at the Port Authority, who had worked to establish the cellphone network in the northeast, helped get Red Hook’s Verizon internet and cellphone service reconnected.

    “351” became a haven for people -- to escape the cold, to charge cell phones, iPads, and power tools, to check e-mail to blow up a new air bed, to start the FEMA application or an insurance claim, or to wait for an escort to enter an apartment building whose electronic doors didn’t lock without power. Sandy victims remarked that the gallery environment with bright art on the walls was uplifting. The Director of Gallery Brooklyn, Jenna Weber, was so moved by the scene that she offered to donate 10% of exhibition sales to Red Hook relief.

    PortSide’s MO was to respond to initiatives or needs coming from the community, through both action and communication. Emergency information replaced real estate listings in the storefront window. “351” was the first small business recovery center in Red Hook, before IKEA’s aid center opened or the FEMA trailers arrived, and served as a hub for Red Hook residents and business people to learn about aid programs while gaining emotional support and tips from one another. Residents and businesses could use the space to set up their own meetings – one day included overlapping sessions with a restaurant supply vendor and a legal aid clinic with 20 lawyers. Realty Collective invited Katrina-savvy architect Jim Garrison from the Pratt Institute to talk to a packed house about resilient ways to rebuild. PortSide served as a conduit to and from the growing sources of outside aid: elected officials, the Mayor’s office, FEMA, and the Department of Small Business Services.

    Residents of Pioneer Street showed extraordinary initiative and cooperation on their one block and brought many ideas down the street to PortSide, who helped manage them and shared them with other Red Hook residents.  One example was our coordination of the services of angel electrician Danny Schneider, who arrived from nearby Park Slope in Brooklyn and went on to inspect 60 homes at no charge and to repair many.  (He also volunteered in the Rockaways.)

    PortSide closed the center in early December. During PortSide’s time ashore, the shorepower connection to the tanker MARY A. WHALEN was knocked out, and PortSide operated for 35 nights with flashlights and one 15 amp extension cord.

    Today, we continue providing Sandy relief work via other social media, working with elected officials and on post Sandy initiatives from the Mayor’s office, and by responding to requests from residents and businesses. We are developing plans for programs that will help Red Hook learn from its own response and develop response plans for future floods. PortSide wants to bring its two constituencies, the world ashore and the world afloat, together. We want to help train inland people in the mariner knowledge base that enabled us to prepare the ship for the storm and which might have prevented a lot of the damage.

    Our nominator for the award, the District Manager of Brooklyn Community Board 6 Craig Hammerman wrote “PortSide’s work is an example of the community-based, mutual-aid system that has caused the heavily-damaged neighborhood of Red Hook to become a model for New Yorkers looking for lessons in the Sandy story.” 

    PortSide NewYork is a nonprofit in Red Hook, Brooklyn, focused on waterfront issues. Since 2005, the organization has operated from the Mary A. Whalen, an oil tanker on the National Register of Historic Places.

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  • Fulfilling our Duty

    Posted by Brian Buhman on June 20, 2013 at 8:42 AM EDT

    Brian BuhmanBrian Buhman is being honored as a Champion of Change for the leadership he demonstrated in his involvement in response and recovery efforts following Hurricane Sandy.

    I am honored to be a White House Champion of Change.

    I've always enjoyed helping others and doing service projects. As a kid I did a lot of projects through the Boy scouts and my church. After 9/11, I chose to help by joining the Marine Corps. I spent 4 years on active duty and completed 2 tours to Iraq. When I got off of active duty, there was always something missing. I was lucky enough to always have a fellow veteran nearby for camaraderie, but even that didn't always fill the void.  When I found out about Team Rubicon in 2011, I knew this was something I would love doing. Responding to high stress situations not knowing where you'll sleep or when you'll eat next while helping people is exciting to me. I signed up online and within a few months was driving 11 hours on a Friday night to tornado ravaged Henryville, IN.  The devastation was intense and hard to believe. You see this kind of stuff in pictures and on TV, but nothing compares to seeing it firsthand.  We were able to help a few homeowners start their recovery process before moving on which made the 22 hour round trip worth it.

    After Indiana, I was made a State Coordinator for Pennsylvania. I spent the next 6 months making disaster response connections, trying to build the volunteer base in PA, planning service projects and other events. It was a slow process but we started to get moving by the end of summer 2012.  When Sandy was approaching, I spent hours on pre-storm conference calls with SEPA VOAD (Southeastern Pennsylvania Voluntary Organizations Active in Disaster) and my regional leadership. We began getting teams on standby throughout FEMA Region III so that we were ready to respond anywhere.  Once Sandy made landfall we realized that New York and New Jersey had been hit the hardest so we sent most of our volunteers there with the Regional and National Leadership.

    As the Pennsylvania State Coordinator of Field Operations, I felt it was my duty to stay behind and help the people in my surrounding communities before moving on. Pennsylvania had not been hit nearly as hard but there were hundreds if not thousands of trees down and it can cost a homeowner around $1000 to get one tree removed. Through my partnership with SEPA VOAD and the county OEM's I was able to identify homeowners that needed help. Myself and 3 other Team Rubicon members started chainsaw work while the back end of the storm was still passing through.

    We began to realize that many homeowners were not in immediate need of tree removal and that there were still assessments being done, so we chose to hold off our daily response until the weekend. This would give us time to gather a list of homes needing work and get a better assessment of the area. One of the biggest challenges that first day was getting ahold of gear. Team Rubicon Pennsylvania had not responded to a disaster yet, so we did not have a cache of chainsaws readily available.  We can usually stop at a Home Depot on our way to the disaster zone, but when you live in the disaster zone gear is hard to find.  We were able to overcome that by borrowing some gear from friends and family until we could get ahold of what we needed.  A lot of thanks go out to those people that let us borrow their equipment,  The Home Depot Foundation for supplying us with the gear needed to complete our mission and Team Rubicon member Ryan Stehman for being by my side every time we went out and keeping our equipment in good working order.

    I spent the next 3 weeks on conference calls, organizing weekend response teams, and doing assessments for Montgomery and Chester County.  Finding people that needed our help was tough at first. Our county connections would give me a list of homes that reported damage and I would call or drive to them and do an assessment to see if we could help.  This seemed to work very well but most of the homes were either already taken care of or awaiting an insurance adjuster.  We then started knocking on doors, explaining who we are, what we do, and asking if we could help.  This seemed to work out pretty well. Our best option came when I got ahold of Danielle Bush at the United Way of Bucks County. She had many homeowners contacting her and she was able to make the connection between us and them.

    We continued our work until the lists began to dry up and we couldn't find homeowners looking for help.  I partnered with Julia Menzo from Liberty Lutheran Services, and the rest of the VOAD to plan a clean-up weekend in mid-December. This gave us time to gather work orders and volunteers.  The weekend went well and we were able to complete all eight homes in one day.

    Since December, I held one other clean-up weekend in PA and there have been many others held in New York and New Jersey. There are still people in need of help out there and I hope this Champions of Change discussion brings some attention back to the victims of Sandy.  There are many organizations out there still chopping away at lists of work orders and I hope the warm weather can bring out hundreds of volunteers to help get it done.

    Brian Buhman is a Marine Corps veteran who served two tours of duty in Iraq. His desire to continue his service by helping his community and other veterans led him to join Team Rubicon, a disaster response veterans service organization in 2011. Since March 2012, he has been a State Coordinator for Pennsylvania.

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  • Volunteering, Big and Small

    Posted by Nicole Schultz on June 20, 2013 at 8:36 AM EDT

    Nicole SchultzNicole Schultz is being honored as a Champion of Change for the leadership she demonstrated in her involvement in response and recovery efforts following Hurricane Sandy.

    It is such an honor to have been selected as a White House Champion of Change for Hurricane Sandy efforts. Serving has always been a big part of my life.

    “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.”

    This empowering and inspiring quote by Edmund Everett Hale was personified by the courageous actions of the volunteers whom I served beside during the relief efforts of Hurricane Sandy. I, along with so many others, was just doing my part. Here is my story.

    I started volunteering at a young age through my church youth group. We participated in several volunteer events throughout the year and then in the summer we would go on week-long mission trips. These opportunities fostered my love of volunteering and serving.

    It was after volunteering with the tornado relief efforts at Joplin, MO, was I inspired to search for something that would allow me to volunteer and travel on a low budget. That was when I came across AmeriCorps NCCC. I immediately knew this was something I wanted to do.  I had just one semester left before graduating with my Certificate and wasn't sure of the direction I wanted to go in.

    I received my Certificate in American Sign Language (ASL) Studies last May. I have always been fascinated with ASL. When I decided I wanted to learn ASL, I did not know one person who was Deaf, as so many who decide to learn ASL do. I have always thought that it was a beautiful language. The more that I have learned about it, the more I appreciated the language and the Deaf culture. Learning about the history of the Deaf culture and how the Deaf people have been oppressed and disadvantaged by the language barrier, made me want to contribute in some way or fashion.

    Last August, I left for AmeriCorps NCCC/FEMA Corps. Throughout my term of service in FEMA Corps, there have been many challenges, as well as new experiences. I never would have thought that I'd be living on a ship in New York for a month. These experiences really make up AmeriCorps NCCC. This year will always have a special place in my heart.

     Hurricane Sandy has been a tremendous experience for me. There are so many stories that have touched me. I can remember when we first got to New York and my team, being community relations, was sent out to Breezy Point where FEMA had not yet been. We were supposed to go door-to-door to let these people know that the first step to getting help from FEMA was to register. We could not walk more than a block before people swarmed us and asked us question after question. I will never forget that overwhelming feeling that these people needed our help.

    Another moment was while working at a Coney Island Hospital, a woman came up to the table explaining that her sister was Deaf and had cognitive difficulties. Her sister didn't know how to go about registering with FEMA. The next day, along with her brother, she brought her Deaf sister. And together alongside her siblings, my team member and I were able to sign with the Deaf applicant and get her registered. That day will forever be imprinted in my mind. After an entire day of sitting in a freezing hospital, that one registrant brought a little warmth to me.

    Once my term of service is over in AmeriCorps, serving will certainly not be over in my life. I intend to keep volunteering wherever I am. I am also looking into applying to be a team leader in AmeriCorps NCCC for January.  As far as my ASL education goes, I am considering going back to school to try to be an interpreter or volunteering at a Deaf school.

    Through my experiences during my term of service in AmeriCorps NCCC/FEMA Corps, I have come to believe even more strongly that, although I may not be able to do a lot, I can still make a huge impact in any single person's life.  I encourage others to challenge themselves as well to do something greater, whether it be big or small.

    Nicole Schultz is a recent graduate of Johnson County Community College and a native of Olathe, Kansas. Upon learning about AmeriCorps NCCC’s new program, FEMA Corps, she applied and was accepted as a corps member.

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  • Helping Near and Far

    Posted by Adam Marlatt on June 20, 2013 at 8:33 AM EDT

    Adam MarlattAdam Marlatt is being honored as a Champion of Change for the leadership he demonstrated in his involvement in response and recovery efforts following Hurricane Sandy.

    I am so very honored to be awarded the Champion of Change title and hope that this recognition can highlight our response work while further building connections to improve our capability and capacity in future disaster situations.

    I founded Global Disaster Immediate Response Team (DIRT) in 2010 after the devastating earthquake that hit Haiti, killing hundreds of thousands of people, wounding and displacing countless more, and decimating an already fragile infrastructure.  In the days following that disaster, Global DIRT volunteers worked to transport critically injured patients (ambulances were non-existent in the city) while connecting the small clinics and hospitals with the medical supplies and resources they needed most.  It was because of this experience that DIRT began to implement the concept of inserting a small team of highly trained operators from the first responder and prior service military community to volunteer as subject matter experts in large critical incidents around the world. In the past three years, while continuing to support the rebuilding in Haiti, we have responded to flooding in Pakistan, earthquakes in New Zealand, and the tsunami in Japan providing emergency medical support, potable water, and radiation monitoring.

    I first came across Hurricane Sandy in Haiti where our team is working with the Haitian Government and Minister of Tourism to build a 911 and ambulance network to improve existing infrastructure and allow for the further expansion of business, tourism, and public safety.  After working non-stop for the first week, the situation in Haiti stabilized and I was able to take part of our team up to NYC where the storm had just impacted.  Our first assessment of the disaster was that there was a critical need for inter-agency coordination with the groups appearing, a reliable form of digital communication, and identifying the needs of individual families while connecting them with the appropriate agency that could respond.  We then brought in team members and associates from partner organizations around the globe to scale up our operation.  This included members of the Volunteer Army Foundation of New Zealand, computer programmers from Boston and Ireland, and more of our team from Haiti.

    We first began assisting in the Belle Harbor section of New York, which quickly turned into a hub for private sector donations that were flowing in from the city.  At that location we credentialed volunteers, coordinated food delivery, and distributed hundreds of thousands of items to the Rockaways, NY.  DIRT then began working with various small groups that were being formed to do everything from debris removal to health and wellness checks.  It became clear that the disaster would require countless hours of volunteer manpower and support from the private sector to work with City, State, and Federal government agencies operating in the area.  We also began to see issues emerge from inaccurate or outdated information.  To better inform storm survivors we contacted Toyota and other private sector partners who were able to print tens of thousands of multilingual information packets to distribute at relief shelters.

    The biggest challenge residents faced immediately after the storm was communicating with loved ones and agencies that could provide aid.  This was due to the collapse of all traditional utilities in the area (cable Internet, cellphones, land lines, radio, and print news).  From my past experience with the Marines, I knew that we needed a wide area network and several satellite fly-away systems to accomplish getting residents reconnected.  DIRT then contacted GATR, a company that provides inflatable ground antenna solutions for broadband Internet (think a giant beach ball satellite dish) and New Spirit Alliance for funding.  Within 48 hours, we had a working network up to provide Internet access to thousands of residents and shortly after Google came in with chrome books allowing our team to set up free cyber cafe sites across the city to facilitate resident enrollment in FEMA assistance and NYC's Rapid Repairs program.

    Through our interaction with Super Storm Sandy survivors we began to see a critical gap where residents were in need, agencies were providing critical services to assist the problem, and the two groups weren't able to find each other.  The NY National Guard was tasked out to NYC's Office of Emergency Management (OEM) and was going door to door to check on residents as the temperature began to drop and winter approached.  Realizing the human resources available through the National Guard, our team quickly developed a web based application platform that operated in the cloud to allow soldiers to enter information on resident needs into tablet computers.  Through funding with The Robinhood Foundation we scaled the project up and were able to complete over 140,000 home visits, collecting critical needs data.  This information was then sent in real time from NYC OEM to the NYC City Hall's Center for Innovation through Data Intelligence (CIDI), a health and human services data clearing house for the city, who then sent needs requests to city agencies in real time.  This allowed for residents to be evacuated to temporary housing, provided for food and supply delivery for homebound and disabled residents, and enabled critical utilities to be turned on in resident homes.  We then implemented Immersive Media's Street View technology to further identify damaged areas and map the recovery progress.  These technology innovations allowed for our team to stay connected with residents in need for months after the storm, ensuring that no resident is left behind.

    On behalf of Global DIRT, I would like to thank all of the donors, volunteers, and partner city agencies who made our recovery effort efficient and effective.  I hope that this award will further connect us with City, State, and Federal Agencies to improve future domestic disaster response incidents.

    Adam Marlatt is a Marine Reserve Infantry Sergeant and the founder of Global Disaster Immediate Response Team (DIRT).

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