In 2012, The John Merck Fund awarded a $1 million, four-year grant to the University of California, Davis, for Principal Investigator David Hessl’s research project, “Cognitive Training for Fragile X Syndrome.”
Fragile X syndrome (FXS) is the most common inherited cause of autism. Prevalence estimates are 1 in 4,000 to 8,000. The phenotype associated with FXS includes both behavioral and cognitive deficits in addition to physical features. The behavioral phenotype typically includes attention-deficit hyperactivity disorder, anxiety and intermittent aggression, which can cause significant difficulties for families. Individuals with Fragile X Syndrome demonstrate profound executive function deficits that interfere with learning, socialization, and emotion regulation.
Dr. Hessl’s study, the first non-pharmacological controlled trial for FXS, evaluated the efficacy of Cogmed, a cognitive training program that enhances working memory and executive function. The study provided evidence that children and adolescents with FXS can engage and make progress in an intensive web-based working memory training program, over a period of 5-6 weeks. The primary hypothesis that participants completing the publicly available adaptive training versions of the program will make significantly greater gains in standardized measures of working memory than those completing a non-adaptive “control” version was not confirmed. However, both groups improved on a variety of metrics. The John Merck Fund has made an additional $181,500 grant to enable Dr. Hessl to mine data from the original study to glean more insight about what factors contribute to improved working memory and executive function in study participants.
The Journal of Neurodevelopmental Disorders published a paper on Dr. Hessl’s research.
JMF’s grant to Dr. Hessl is part of our Developmental Disabilities Program’s Translational Research Program – supporting research with the potential for near-term positive impact on people with developmental disabilities and their families.
“Milk with Dignity will bring about a new day for dairy workers. Ben & Jerry’s is just the beginning. Company by company, we the workers—whether parents working to provide for their children, or youth dreaming of a brighter future—will transform this industry and win our human rights.” –Enrique Balcazar, Migrant Justice Farm Worker Member*
Migrant Justice was formed in 2009 in response to the death of a young Vermont dairy farm worker by a diverse alliance of farm workers and concerned Vermonters, with the goal of allowing farm workers the opportunity to gather, discuss community problems, and envision solutions and plans for action.
In 2014, Migrant Justice’s members conducted a survey of 200 of the estimated 1,200-1,500 immigrant farm workers in the Vermont dairy industry, and found that a variety of abuses were surprisingly common. For example, 40% were paid below Vermont minimum wage, 29% worked seven or more hours in a row without a break, and 15% had insufficient heat in their housing. Migrant Justice’s members converted these violations into solutions by creating the Milk with Dignity Code of Conduct, which defines the human rights essential to a dignified workplace and fair housing.
To place these abuses in a larger context, Migrant Justice next addressed the corporate structure of the dairy industry and traveled to Florida to meet with the Coalition of Immokalee Workers (CIW) to learn about their Campaign for Fair Food. Through legally binding agreements with fourteen major fast food and supermarket corporations—including McDonald’s, Whole Foods, and Walmart—the tomato workers of the CIW require companies to buy from tomato growers that follow a farm worker-authored code of conduct and pay a bonus that reaches workers.
The five elements of Migrant Justice’s Milk with Dignity program are adapted from the Fair Food Program: the code of conduct mentioned above; farm worker education; a third party body that monitors, enforces, and audits farmer compliance; economic relief provided to both farm workers and farmers; and a legally binding agreement that defines the program as an enforceable contract under the law.
In December 2014, Migrant Justice’s leadership invited Ben & Jerry’s to become the first company to join Milk with Dignity after years of educating the company about the challenges farm workers face in their supply chain. Because Ben & Jerry’s has distinguished itself for its commitment to social justice and high standards for sourcing ingredients in its world famous ice cream, workers hoped the company would be a proactive champion of the Milk with Dignity Program.
Ben & Jerry’s is also important to Migrant Justice because it purchases 100% of its cream in the Northeast from St. Albans Cooperative farms where many (if not the majority) of Vermont’s farm workers are employed. Further, from the beginning Vermont dairy workers have recognized that, in order for Milk with Dignity to be truly viable, buyers like Ben & Jerry’s would have to pay farmers a better price for their milk in order to offset costs of compliance due to unfair and volatile conditions in the dairy industry.
Although Ben & Jerry’s signed an Agreement to Cooperate on June 19, 2015, and they have participated in ongoing negotiations with Migrant Justice since then to hash out the details, the company has yet to finalize its participation by signing a legally binding agreement. Feeling exasperated by two full years of delayed action, Migrant Justice on June 17, 2017, led a 250-person pilgrimage through Vermont’s working rural landscapes with a national call to action for human rights, walking thirteen miles from Vermont’s State House to the Ben & Jerry’s plant in Waterbury. The march placed Milk with Dignity on the national center stage and piqued media interest from coast (Boston Herald) to coast (San Francisco Chronicle).
This day of action was supported by allies across the country, such as the Rev. Dr. J. Herbert Nelson, Stated Clerk of the Presbyterian Church (USA) General Assembly, who delivered a letter to Ben & Jerry’s CEO Jostein Solheim on behalf of the 1.4 million-member Protestant denomination calling on Ben & Jerry’s to join the Milk with Dignity Program. As Dr. Nelson states in this letter,
“I urge you, do not delay any longer. Every day is a day that farm workers continue to suffer, farms are stretched further, and your customers grow more impatient. Sign in fact what you have already agreed to in principle, so that these anticipated transformational gains in human rights and sustainability may become a reality in Vermont’s dairy industry.”
*Click here to read one of a Migrant Justice member’s personal story of his work on Vermont dairy farms and participation in creating the Milk with Dignity program.
For the past fifteen years, the Environmental Health Strategy Center has inspired groundbreaking state policy and innovative market-based campaigns to phase out some of the most toxic chemicals from household goods and baby products.
The Environmental Health Strategy Center (EHSC) was founded in 2002. Through its campaigns and partnerships, the center works to ensure that all people are healthy and thriving in a fair and healthy economy. EHSC Executive Director Mike Belliveau is widely recognized for his leadership in the environmental health community and received The John Merck Fund’s Frank Hatch Award for Enlightened Public Service, or “Sparkplug Award,” in 2009.
EHSC is the lead coordinator of the Alliance for a Clean and Healthy Maine, which played a key role in educating policymakers about the first comprehensive safer chemicals law in the country, the Kid Safe Products Act, which passed by the Maine legislature in 2008. The bill requires Maine to adopt a list of priority chemicals of high concern, forces manufacturers to disclose the toxic chemicals they add to products, and authorizes the state to require safer alternatives whenever they are available.
In 2014, EHSC recognized the potential that markets-based approaches could have to move the economy toward safer chemicals, and they undertook a thoughtful strategic planning process to explore which type of campaigns could have the most market impact that would also be the best fit for EHSC’s skills and expertise.
This planning process led them to focus on phthalates, hormone-disrupting chemicals that can lower testosterone and alter thyroid function. Scientists have linked exposure to some phthalates during pregnancy and early childhood to changes in the developing brain that may result in children struggling to succeed in school, work, and life.
Scientists agree that for most people, the greatest exposure to phthalates comes from food. They are not intentionally added to food, but migrate into food products during food processing, packaging, and preparation. A 2014 scientific review paper concluded that dairy products were the largest contributor of dietary exposure to the most common phthalate, DEHP, for pregnant women and children.
EHSC began working with partner organizations to research phthalate exposure, participate in federal regulatory processes concerning phthalates, and develop a campaign targeting phthalates in children’s foods. That group of organizations is now known as the Coalition for Safer Food Processing and Packaging. Their campaign to urge Kraft Heinz to eliminate phthalates from macaroni and cheese products launched in July 2017.
The New Hampshire Sustainable Energy Association is the oldest and largest member-based nonprofit dedicated to improving New Hampshire’s clean energy economy.
The John Merck Fund began supporting the New Hampshire Sustainable Energy Association (NHSEA) in 2013, when its talented board chair, Kate Epsen, took the helm as executive director. Thanks in large part to Kate’s skills at coalition building and coordination, NHSEA is now seen as a hub for innovative energy initiatives across New Hampshire and boasts a diverse membership of hundreds of businesses and individuals. Its New Hampshire Clean Tech Council represents seventeen different economic sectors, and the council’s top priorities are strengthening the clean tech industry and promoting an innovative, stable, long-term clean tech policy that attracts new jobs, young professionals, and new investment.
In 2016, NHSEA focused on educating policymakers about the benefits of raising the state’s cap on net metering. Governor Hassan signed legislation raising the cap in August 2016. NHSEA was also a major stakeholder in the development of New Hampshire’s new Energy Efficiency Resource Standard, which sets statewide efficiency targets and will go into effect in 2018. In addition to this policy work, NHSEA also hosts many events and workshops and provides technical assistance to its members, and in October will host the ninth annual Local Energy Solutions Conference.
Executive Director Kate Epsen enjoys the variability of her job and relishes the challenge of building relationships with a diverse set of stakeholders that includes representatives from both sides of the political aisle, as well as both climate skeptics and fervent believers. As she puts it, “Working on energy in New Hampshire isn’t like working on it in Vermont, California, or Massachusetts. You need to be able to communicate with colleagues who at times have strongly divergent viewpoints, and to find creative ways to collectively move forward. It’s more challenging, but it’s also inspiring that headway can be made in ways you can’t always foresee.”
“Social-environmental factors have profound effects on neurodevelopment and behavior. We need to address the child’s social environment if treatments are to be successful.”
– Scott S. Hall, PhD, Stanford University
In 2015, The John Merck Fund awarded a $1 million, four-year grant to Scott Hall, Associate Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, to explore the treatment of disruptive behaviors in Fragile X syndrome. Fragile X syndrome (FXS) is an intellectual disability that affects one in 4,000 males and one in 8,000 females and causes learning difficulties, hyperactivity, social anxiety, hypersensitivity to sensory stimuli, and autism and autism-related behaviors.
Many individuals with FXS, particularly boys, show severe disruptive behaviors, such as self-injury, property destruction, and aggression. These behaviors can be extremely distressing for families and severely impact the child’s quality of life and education. Currently available drug therapies for these behaviors have not been shown to be very effective.
Dr. Hall’s research explores how social-environmental factors play a role in the development and maintenance of these behaviors, and his project evaluates a behavioral, rather than pharmacological, treatment for children with FXS. Following in-home assessments, caregivers receive daily coaching over a twelve-week period via telemedicine, enabling them to implement a standardized treatment protocol to reduce problem behaviors. Each child’s treatment is based on an initial analysis of the function of the child’s disruptive behavior.
Dr. Hall and The John Merck Fund hope that his project will have a positive, near-term impact on children with FXS and their families by informing their treatment decisions and decreasing stress at home and at school. The novel use of telemedicine to deliver interventions for problem behavior in FXS may be especially beneficial, given that many families live hundreds of miles from an FXS clinic and disruptive behaviors can make face-to-face treatment a challenge. Results from this study may also set the stage for future combined pharmacological and behavioral intervention trials, and may be used as evidence in efforts to convince health care companies to cover behavioral treatment.
JMF’s grant to Dr. Hall is part of our Developmental Disabilities Program’s Translational Research Program – supporting research with the potential for near-term positive impact on people with developmental disabilities and their families.
Dr. Hall has a long history of novel research in Fragile X syndrome treatments. He and his research lab – the Translational Applied Behavior Analysis Laboratory – focus on understanding how biological and environmental factors affect the development of behavior disorders in children with FXS and other developmental disabilities. The goal of the lab is to develop syndrome-specific treatments based on the underlying biological and/or environmental factors that cause these behaviors.
Shifting just 5% of New England public schools’ $149.8 million annual food budget to purchases of regionally sourced foods would generate $7.5 million additional dollars for the region’s farm economy.
Farm to Institution New England (FINE) is a six-state network of over 300 nonprofit, public and private entities collaborating to strengthen the region’s food system by increasing the amount of New England-grown and processed food served in our region’s schools, hospitals, colleges and other institutions. Increasing the demand for regionally-grown food will create incentives for more viable food and farm enterprises that provide jobs and support a strong rural economy. It will also create better access to more affordable, healthier and diverse types of New England foods.
In April 2015, FINE hosted its inaugural Farm to Institution Summit, which brought over 600 leaders in the regional farm-to-institution field together for an unprecedented three-day networking and education gathering. In addition to local leaders in farm-to-institution programs, the regional network’s influence was enough to attract the US Department of Agriculture and large food suppliers such as Sodexo and Sysco to the summit.
Regional food supply chains are complicated, which is why FINE also developed the Shared Metrics Initiative to assess the impact that food-to-institution efforts are having across the supply chain. This new web dashboard shares data from 982 schools, 105 colleges, 38 hospitals and 56 food distributors, and is quickly becoming a model that other regional and national food systems are looking to adopt.
FINE is a model of how to encourage regional food systems to shift toward local, sustainable and healthy foods by using the power of the marketplace, and they are a critical part of The John Merck Fund’s Regional Food Systems Program.
“If you really want to study neurodevelopment, you have to study it in the brain, not just in a culture dish.”
Also pictured above: Dr. Meng Li.
In 2015, The John Merck Fund awarded grants to Xinyu Zhao, PhD, and Anita Bhattacharyya, PhD, from the University of Wisconsin-Madison Waisman Center, to explore cutting edge genetic treatments for Fragile X syndrome. Fragile X syndrome is an intellectual disability that affects one in 4,000 males and one in 8,000 females, and causes learning difficulties, hyperactivity, social anxiety, hypersensitivity to sensory stimuli, and autism and autism-related behaviors.
Just one single gene on the X chromosome, when shut off, causes Fragile X syndrome, and Xinyu and Anita are combining their expertise to find ways to reactivate this gene. While previous researchers have conducted their studies on mice, our grantees’ work will use human stem cells in order to draw more accurate conclusions about Fragile X syndrome treatments. Using a new genetic editing tool, they will insert a “reporter gene” allowing them to identify when new drugs succeed in reactivating the gene that causes Fragile X syndrome. Xinyu will also take stem cells and transplant them into mouse brains to more effectively study brain development and drug treatment.
JMF’s grant to Xinyu and Anita is part of our developmental disabilities Translational Research Program – supporting research with the potential for immediate impact on people with developmental disabilities and their families.
Both researchers have a long history of novel research in Fragile X syndrome treatments. Xinyu Zhao, PhD, and her research lab focus on the molecular mechanisms involved in neural stem cells and brain development to in order to treat neurological disorders and injuries. Anita Bhattacharyya, PhD, and her lab use stem cells to research Down and Fragile X syndromes with the hope of developing therapies to address these genetic developmental disabilities. Xinyu and Anita, along with The John Merck Fund, believe that this study will advance our understanding of Fragile X syndrome and open the door to future treatments.
The SCHF coalition cumulatively represents over 11 million individuals dedicated to reforming chemicals policy at the national level.
Founded in 2009, Safer Chemicals, Healthy Families (SCHF) is a national coalition with the goal of reducing the number of toxic chemicals present in everyday products. Today, it encompasses 450 organizations including environmental justice groups, state environmental health coalitions, parents’ organizations, the learning and developmental disabilities community, breast cancer activists, health care providers, reproductive health and rights groups, national environmental organizations and businesses. The SCHF coalition cumulatively represents over 11 million individuals dedicated to reforming chemicals policy at the national level.
The coalition integrates state and federal advocacy and market pressure to reduce the use of toxic chemicals. Most notably, they created Mind the Store, which pushed giant retailers including Walmart, Target, Home Depot, Lowes and others to replace toxic chemicals in their products with safer, healthier alternatives.
SCHF’s persistent advocacy means that in 2016, we will likely see the first overhaul of the country’s chemicals regulations in 40 years. This new policy will be a major opportunity to put human health and the environment above corporate profits, a major goal of our Health and the Environment Program.
Since 1987, the Toxics Action Center has organized over 800 communities across New England to reduce pollution and improve public health.
As a John Merck Fund grantee, the Toxics Action Center is a major force behind our ongoing effort to make New England the first coal-free region in the country. Closing coal plants across the region cannot succeed with a cookie-cutter approach. Campaigns must recognize the importance of local leadership and unique community conditions. That’s why the Toxics Action Center empowers and trains local advocates and helps them develop plans that rely on state and local laws and regulations.
Their strategy has been enormously successful – four of the region’s seven coal plants have been shut down. Three more coal plants show signs of yielding to pressure from changing clean energy markets and engaged citizens.
But it’s not enough to simply shut down coal plants. The Toxics Action Center campaigns put community redevelopment front and center as plants are decommissioned. They also push for clean energy alternatives, particularly as natural gas and other fossil fuel infrastructure rushes to fill the void left by closing coal plants. Toxics Action Center is not only directly supporting groups that oppose new gas plants and pipelines, but they are also continuing to train community groups to become more active and informed as clean energy advocates.
The Toxics Action Center is led by Executive Director Sylvia Broude and the coal and energy work is supported by Lead Community Organizer Claire Miller. Together, their decades of grassroots organizing experience helps activists all over the region take a driving role in a clean energy future.
The John Merck Fund would not be able to pursue its goals of reducing greenhouse gas emissions, retiring coal-fired plants, and increasing use of clean energy in New England without the dedicated leadership of Sylvia, Claire and the team at Toxics Action Center.