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MySocialGoodNews is dedicated to sharing news about
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Crowdfunding for Social Good

Devin D. Thorpe

Devin Thorpe


This category includes stories about philanthropy, typically covering the generosity of individuals, families, groups of individuals and foundations (nonprofits primarily in the business of funding other nonprofits.

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Breakthrough As World’s Largest Palm Oil Trader Gives Forest Destroyers Nowhere To Hide

After an intensive global campaign by Greenpeace, Wilmar International has published a detailed action plan to map and monitor its palm oil suppliers.

Press Release – Washington, D.C. – The world’s largest palm oil trader, Wilmar International, has published a detailed action plan to map and monitor all of its suppliers. If implemented, this would put the palm oil giant, which supplies 40% of the world’s palm oil, one step closer to finally eliminating deforestation from its supply chain and would have a major impact on the rest of the industry.

“Wilmar supplies palm oil to most of the world’s major food and cosmetics brands. So today’s announcement is a potential breakthrough. If Wilmar keeps its word, by the end of 2019 it will be using satellites to monitor all of its palm oil suppliers, making it almost impossible for them to get away with forest destruction. Greenpeace will be watching closely to make sure Wilmar delivers,” said Kiki Taufik, Global Head of Indonesian Forests Campaign, Greenpeace Southeast Asia.

The move follows an intensive global campaign by Greenpeace that aimed to end deforestation for palm oil across the supply chain of the biggest household brands and palm oil buyers in the world. Over 1.3 million people signed a Greenpeace petition calling for an end to deforestation for palm oil.

In the past three months, activists occupied Wilmar’s refinery in Indonesia and twice boarded a tanker ship carrying Wilmar’s palm oil products. Greenpeace Italy blockaded the factory of one of its major customers, Mondelez (owner of Oreo, Cadbury and Ritz). Activists across the world also brought scenes of forest destruction to Mondelez HQs around the world, including the office in Deerfield, Illinois.

Greenpeace is now pausing its campaign to give Wilmar space to put this plan into action.

Forest destruction for commodity production is fuelling a climate and extinction crisis. Scientists warn that keeping global warming below a 1.5ºC rise means ending deforestation and restoring forests. Brands and traders promised to clean up their supply chains by 2020. [1.] However, with less than 400 days to go companies are still failing across the board, in part because traders and their customers failed to gather the maps of their suppliers’ plantations needed to monitor what happens on the ground.

Wilmar’s new action plan is designed to address that gap: it commits Wilmar to map its suppliers’ entire landbank by the end of 2019, including concessions from which it does not yet source, and to use high-resolution satellite monitoring to check for deforestation. Companies caught clearing rainforest are to be immediately suspended.

Wilmar’s announcement puts pressure on the rest of the sector, including other major commodities traders like Golden Agri Resources and Musim Mas that also source palm oil from forest destroyers. Household brands like Mondelez, Nestlé and Unilever, source from many different suppliers and have a responsibility to see equivalent commitments rolled out across the industry.

“As the world wakes up to the climate and extinction crisis, inaction is not an option. Wilmar has taken an important step and must now put its plan into action immediately. Stopping deforestation requires industry-wide action. Other traders and brands must now follow with credible plans to map and monitor all of their suppliers. Equally important is action to end exploitation and human rights abuses in the palm oil sector,” said Taufik.

[1] In December 2010, members of the Consumer Goods Forum, an industry association comprising 450 of the biggest consumer-facing brands, committed to eliminate deforestation from their supply chains of agricultural commodities by 2020, including cattle, palm oil, pulp and soya products.

In December 2013, Wilmar became the first palm oil trader to adopt a ‘no deforestation, no peat, no exploitation’ policy that applied to its own plantations and those of its suppliers. By the end of 2014, all major palm oil traders had adopted similar policies. Yet deforestation for palm oil continues because traders and their customers lack the maps needed to monitor what happens on the ground.

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BlueOrchard launches UCITS Impact Bond Fund to address UN Sustainable Development Goals in emerging markets

Press Release – Zurich, 10 December 2018 – Swiss-based impact investment manager BlueOrchard Finance Ltd (“BlueOrchard”) has launched a UCITS-compliant Emerging Markets SDG Impact Bond Fund to grant retail and institutional investors access to a “liquid impact fund”. The Fund is designed for investors that seek a scalable and liquid alternative to traditional microfinance funds.

The BlueOrchard UCITS-Emerging Markets SDG Impact Bond Fund invests in bond issuances from corporations and public/private financial institutions that finance or engage in impact activities which advance the UN Sustainable Development Goals (SDGs). The fund will invest in a diversified portfolio in emerging and frontier markets with the goal of providing retail and institutional investors with a scalable, impact oriented alternative to traditional fixed income products. The Fund, registered in Luxembourg and managed by BlueOrchard Asset Management (Luxembourg), SA is accessible to investors with a variety of share classes in different currencies to suit investor requirements.

“Our investors have expressed considerable interest of late in a vehicle that combines financial and social returns with liquidity. We have responded by creating this Fund and believe that it presents an excellent opportunity for both BlueOrchard and our investors to further engage in key emerging markets and expand our impact,” said Patrick Scheurle, CEO of BlueOrchard.

“As a company founded by initiative of the UN, we are extremely proud to launch an impact fund dedicated to helping advance the UN Sustainable Development Goals in emerging markets,” said Peter A. Fanconi, BlueOrchard’s Chairman of the Board.

The Fund is managed by an experienced team with a long track record of successful debt investments in emerging and frontier markets. They combine a unique field presence, proprietary rating methodologies and broad hedging capabilities to deliver innovative impact investment products. BlueOrchard applies a robust country selection process and rigorous bottom-up credit selection governed by a proven risk management framework. In addition to financial analysis, BlueOrchard conducts a social performance analysis on all investments based on “SPIRIT”, the firm’s proprietary social performance assessment tool.

Building a financial system that supports sustainable and climate-smart growth has taken the center stage of global efforts to advance and achieve the SDGs. To address the growing investment gap in emerging and frontier markets, urgent and concerted action is needed. For BlueOrchard, closing this gap has been our mission since day one. The company has focused its mission and its investment strategies on empowering people in the developing world since 2001 and has deployed more than USD 5bn in more than 80 markets.

About BlueOrchard Finance Ltd

BlueOrchard is a leading global impact investment manager. The firm is dedicated to fostering inclusive and climate-smart growth, while providing attractive returns for investors. BlueOrchard was founded in 2001, by initiative of the UN, as the world’s first commercial manager of microfinance debt investments. Today, BlueOrchard provides investors around the world with premium investment solutions, including credit, private equity, and sustainable infrastructure. Being an expert in innovative blended finance mandates, the firm is a trusted partner of leading global development finance institutions. With a major global presence and offices on four continents, BlueOrchard has invested to date more than USD 5bn across 80 emerging and frontier markets, enabling tangible social and environmental impact. BlueOrchard is a licensed Swiss asset manager of collective investment schemes authorized by FINMA. Its Luxembourg entity, BlueOrchard Asset Management S.A., is a licensed UCITS management company as well as a licensed alternative investment fund manager (AIFM) authorized by CSSF. For additional information, please visit:


The information in this document was produced by BlueOrchard Finance Ltd (“BOF”) to the best of its present knowledge and belief. However, all data and financial information provided is on an unaudited and “as is” basis. The opinions expressed in this document are those of BOF and its employees and are subject to change at any time without notice. BOF provides no guarantee with regard to the accuracy and completeness of the content in this document and BOF does not under any circumstance, accept liability for any losses or damages which may arise from making use of, or relying upon any information, content or opinion provided by BOF in this document. This document may contain references or links to other documents and websites and BOF has not reviewed such other documents and websites and is not responsible in any way in relation to the content of such documents and websites.

The information in this document is the sole property of BOF unless otherwise noted, and may not be reproduced in full or in part without the express prior written consent of BOF.

All investments involve risk. We note specifically that past performance is not an indication of future results. Emerging markets impact investments involve a unique and substantial level of risk that is critical to understand before engaging in any prospective relationship with BOF and its various managed funds. Investments in emerging markets, particularly those involving foreign currencies, may present significant additional risk and in all cases the risks implicated in this disclaimer include the risk of loss of invested capital.

The materials provided in this document are for informational purposes only and nothing in this document can be construed as constituting any offer to purchase any product, or a recommendation/solicitation or other inducement to buy or sell any financial instrument of any kind and shall not under any circumstances be construed as absolving any reader of this document of his/her responsibility for making an independent evaluation of the risks and potential rewards of any financial transaction. We note in particular that none of the investment products referred to in this document constitute securities registered under the Securities Act of 1933 (of the United States of America) and BOF and its managed/advised funds are materially limited in their capacity to sell any financial products of any kind in the United States. No investment product referenced in this document may be publicly offered for sale in the United States and nothing in this document shall be construed under any circumstances as a solicitation of a US Person (as defined in applicable law/regulation) to purchase any BOF investment product.

The information provided in this document is intended for review and receipt only by those persons who are qualified (in accordance with applicable legal/regulatory definitions) in their respective place of residence and/or business to view it, and the information is not intended under any circumstances to be provided to any person who is not legally eligible to receive it. Any recipient of information from this document who wishes to engage with BOF in furtherance of any transaction or any relationship whatsoever must consult his/her own tax, legal and investment professionals to determine whether such relationship and/or transaction is suitable.

BOF disclaims all liability for any direct or indirect damages and/or costs that may arise from the use of (whether such use is proper or improper), or access to, this document (or the inability to access this document).

Copyright © 2018, BlueOrchard Finance Ltd. All rights reserved.

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Business Must Scale Up Efforts To Avoid Environmental Calamity, Says Top Bluewater Executive At UN Climate Change Conference

Press Release – Katowice, Poland, December 9, 2018 – Anders Jacobson, President of Bluewater, a world leader in game-changing water technologies and solutions, today told over 600 environmental policy-makers and climate technology innovators that the business community must scale up and speed efforts to help find solutions to tackle a looming plastics calamity.

“Business can and must provide the thought-leadership to create and drive the innovative technologies and solutions required to disrupt an industry that today sees 1.4 billion plastic bottles produced every day, many of which end up in landfill and our oceans,” Anders Jacobson said. He added one consequence is that 83 percent of all tap water on average around the world has been shown to contain micro plastic particles, according to research.

Mr. Jacobson was speaking at the Sustainability Innovation Forum, the largest business-focused event taking place during the United Nations climate change conference underway in the Polish city of Katowice.

Following his keynote presentation, Mr. Jacobson was joined by environment ministers from the UK, Finland and Iceland for a panel discussion on how to tackle single use plastic and its impact on the planet’s oceans.

Noting that pervasive micro plastics are now found literally everywhere on the planet from the water we drink to the food we eat and the air we breathe, Mr. Jacobson said Bluewater daily demonstrates how human ingenuity can deliver tech solutions dramatically cutting the need for throwaway plastic bottles.

Bluewater is a Swedish water technology company, founded in 2013, on a belief that clean water is a basic human right, made sustainably at the source and free from toxic single-use plastics.

Designed for use in homes, businesses and public spaces, Bluewater’s purifiers are today deployed in diverse environments to provide alternatives to plastic bottles at marathons, football matches, music and large-scale yoga events across Asia, the USA, Europe and Africa.

Bluewater does not stop at innovating, making and selling its unique reverse osmosis water purifiers, the company is also spearheading a global movement to enhance human and planetary health by eliminating single-use plastics.

“This action model has already forged high impact partnerships with a range of nonprofits in affected communities like Flint, MI and with global sporting actors like Volvo Ocean Race that produce meaningful and tangible benefits to communities and demonstrate there are technologies and solutions already available today to avoid single-use plastics,” Anders Jacobson said.


Joining Anders Jacobson on the Sustainable Innovation Forum panel discussing how to tackle single use plastic and its impact on the oceans were Dr. Therese Coffey, UK Parliamentary Under Secretary of State for the Environment, Gudmundur Ing Gudbrandsson, Iceland’s Minister of Environment and Natural Resources, and Hanna Pokka, Permanent Secretary, Ministry of Environment, Finland.

Bluewater is a world leading water purification company with its global headquarters in Stockholm, Sweden. Bluewater innovates, manufactures and comercializes compact water purifiers for residential, business and public use that harness the company’s patented reverse osmosis technology to remove virtually all pollutants from tap water, including lead, bacteria, pesticides, medical residues, chlorine and lime-scale. Please visit us at

Follow us for water-related news on Facebook, Twitter and Wechat (Search ID: Bluewater). Journalists and bloggers can follow our press releases and blogs at And everyone is welcome to enjoy our themed Bluewater music playlist on spotify at BluewaterPure Radio.

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National Park Foundation and Nature Valley® Increase Access to 10,000 Miles of National Park Trails


Press Release – WASHINGTON (December 10, 2018) National park programs and trails will benefit from the National Park Foundation’s partnership with Nature Valley for the Find Your Park/Encuentra Tu Parque movement. Announced in January, Nature Valley’s support includes a three-year commitment and a donation of $3 million. This donation, in part, will provide funds to improve and restore critical parts of trails, resulting in better access to experience 10,000 miles of trails throughout the National Park System.

“When you restore trails, you open up endless opportunities for recreation and learning,” said Will Shafroth, president of the National Park Foundation. “Nature Valley’s generous support enhances people’s national park experiences now and in the future.”

The commitment consists of a number of projects, including:

Carlsbad Caverns National Park (New Mexico)

Restoring 27 miles of the 100-mile Guadalupe Ridge Trail that extends from Carlsbad Caverns National Park into Guadalupe Mountains National Park.

Natchez Trace Parkway (Tennessee)

Restoring 25 critical miles of the Highland Rim Section of the 444-mile Natchez Trace Parkway.

Shenandoah National Park (Virginia)

Restoring key access points along 15 miles of the 2,180-mile Appalachian National Scenic Trail that weaves through Shenandoah National Park.

For the above-mentioned projects, the National Park Foundation provided funding to Conservation Legacy, a nonprofit conservation corps program.

“At the very core of our brand is our belief that nature makes us better,” said Angela Rassi, director of marketing for Nature Valley. “As part of that belief, we seek to make the best of nature accessible to everyone. Increasing access to 10,000 miles of trails not only ensures that people can see the beauty of the national parks now, but future generations will have access to some of the most beautiful spaces in our country.”

The projects create a conservation and stewardship legacy, modernize infrastructure, increase access to recreational opportunities, and support partnerships with local communities.

Beyond funding these much-needed site-specific projects, the National Park Foundation and Nature Valley are also inspiring more people to #FindYourWay along trails and rivers across the country.

#FindYourWay is an extension of the #FindYourPark/#EncuentraTuParque movement and invites the public to discover their own personal connections to thousands of trails across the National Trails System and more than 12,000 miles of rivers protected by the Wild & Scenic Rivers System.

Learn more about the National Park Foundation at and Nature Valley at


Celebrating 50 years, the National Park Foundation is the official charity of America’s national parks and nonprofit partner to the National Park Service. Chartered by Congress in 1967, the National Park Foundation raises private funds to help PROTECT more than 84 million acres of national parks through critical conservation and preservation efforts, CONNECT all Americans with their incomparable natural landscapes, vibrant culture and rich history, and ENGAGE the next generation of park stewards. In 2016, commemorating the National Park Service’s 100th anniversary, the Foundation launched The Centennial Campaign for America’s National Parks, a comprehensive fundraising campaign to strengthen and enhance the future of these national treasures for the next hundred years. Find out more and become a part of the national park community at


Nature Valley created the granola bar category in 1975 and is the #1 granola brand in the U.S. Bringing great taste to active consumers looking for wholesome snacks, Nature Valley offers 10 varieties of great-tasting granola snacks: Crunchy Granola Bars, Breakfast Biscuits, Sweet & Salty Nut Granola Bars, Protein Bars, Protein Granola, Greek Yogurt Protein Bars, Soft-Baked Oatmeal Squares, Granola Thins, Chewy Trail Mix Bars, Roasted Nut Crunch Bars, and Yogurt Granola Bars. Nature Valley® is part of the General Mills family of brands. General Mills has been making food people for over 150 years. Find out more about our efforts to take care of the earth for the next generation at

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David Muir, Scooter Braun, and Mondelēz International Honored at the 6th Annual Save the Children Illumination Gala – Presented by Johnson & Johnson; Hosted by Jennifer Garner

Event Supported Save the Children’s Efforts to End Preventable Childhood Deaths and Promote Early Childhood Education

NEW YORK, NY – NOVEMBER 14: Sophia Ramirez, Jennifer Garner and Jakob attend the 6th Annual Save the Children Illumination Gala at the American Museum of Natural History on November 14, 2018 in New York City. (Photo by Noam Galai/Getty Images for Save The Children)

Press Release – NEW YORK (November 15, 2018) – Last night at the 6th Annual Save the Children Illumination Gala, Save the Children, the leading organization investing in childhood, honored award-winning journalist David Muir, anchor of ABC’s “World News Tonight;” SB Projects Founder Scooter Braun; and the organization’s philanthropic corporate partner Mondelēz International. The event, which took place on Wednesday, Nov 14, 2018, at the American Museum of Natural History in New York City, was hosted by actor and Save the Children Trustee Jennifer Garner and featured a special musical performance by MILCK.

The Illumination Gala supported Save the Children’s efforts to give more children a stronger start in life by helping end preventable maternal, newborn and child deaths and by supporting early childhood education. In recognition of the occasion, Save the Children celebrated each of the honorees for their achievements in giving children a brighter future.

Jennifer Garner, who has worked with the organization for more than a decade, spoke about her own upbringings and why Save the Children’s mission is so close to her. She said, “Somebody’s gotta focus on the U.S. Having grown up around rural poverty, with a mom who grew up in rural poverty in Oklahoma, and I grew up in West Virginia, it’s just been really important to me that I find a way to help people like the people who helped my mom.”

David Muir, anchor and managing editor of ABC’s “World News Tonight,” accepted the Voice Award for his extraordinary commitment to bringing attention to some of the worst humanitarian crises of our time. He ended his inspiring speech by saying, “This honor is for the children, for their bravery, for their strength and let’s celebrate their future because all of us in this room have the power to make sure they have one.” Muir traveled to Somaliland with Save the Children President & CEO Carolyn Miles in 2016 to report on the food crisis and drought affecting over half the population, including millions of children. The response to his reporting was overwhelming, raising over $3 million for Save the Children’s programs in mere days. Kelly Ripa, who was on hand to present the honor to her friend, said, “I can’t think of anyone more deserving than David for this award, because he chooses to use his voice as a megaphone for the forgotten.”

Scott “Scooter” Braun, founder of SB Projects was awarded the Humanitarian Award for his visionary leadership in mobilizing massive public support for the children and families affected by the unprecedented hurricane season in 2017. In organizing the “Hand-in-Hand” telethon and raising more than $60 million to support survivors, Braun shined a spotlight on the destruction left behind by these historic, back-to-back storms to over 40 million viewers – and in so doing, brought the country together and gave people a reason to hope. Funds raised from the telethon have helped Save the Children serve over 412,000 children and adults in Texas, Florida and Puerto Rico to date. He stated in his speech, “When I come home at night, I see my two boys and they don’t know what I do for a living. They just know daddy is home and they just smile. Everything else doesn’t matter. That’s the gift a child gives an adult. They remind us that the simpler things are the most important things and that they deserve our honestly and our love. I think what [Save the Children] does as an organization allows more children to smile and hopefully more adults to realize those truths.” He insisted on sharing the honor with award presenter and Hand-in-Hand Telethon Executive Producer Bun B. Braun spoke of Bun B, “It’s nice to be a humanitarian, but it’s better to be a hero.”

Save the Children’s Visionary Award was presented to Mondelēz International for its commitment to driving positive impact on people and the planet through its Cocoa Life initiative and the Mondelēz Foundation. Chief sustainability, well-being and public & government affairs officer, Christine McGrath, accepted the award for the organization. In her acceptance speech, McGrath stated, “I truly believe that through our long-standing partnership, Save the Children and Mondelēz International together are empowering communities to be healthier and more sustainable – now and into the future.” Programs in Australia, India, Italy and Mexico – which have reached more than half a million people – have fostered environments to help children, families and communities lead healthier lives through nutrition education, active play and access to fresh food. In Indonesia, Mondelēz International has also partnered with Save the Children on its sustainable cocoa program that works with farmers to help them gain the skills necessary to improve their livelihoods, strengthen their communities and inspire the next generation of cocoa farmers.

Gala presenting sponsor Johnson & Johnson officially launched their new digital tool, Wisdom by Kids. According to Save the Children Trustee and Johnson & Johnson Executive Vice President and Chief Human Resource Officer Peter Fasolo, who spoke at the event, Wisdom by Kids is designed to “capture the ‘wise words’ of young children and allow parents, grandparents, friends, and family to share them with the world to raise donations for Save the Children.” For every quote shared on social media, Johnson & Johnson will donate $1 to Save the Children, up to $1 million dollars.

President & CEO of Save the Children Carolyn Miles, spoke about the progress being made and Save the Children’s continued commitment to saving young lives, “Over 20 years ago, 12 million children in the world under the age of five died of preventable causes. Today, that number has been more than cut in half to 5.4 million. But that’s still 15,000 children a day who die before reaching their fifth birthday, and many of those children die in the first months of their young lives. So, yes, we have come very far indeed. But there is still so much work to do.”

Other notable guests who attended included fashion designer, philanthropist, Gala Co-Chair and Save the Children Trustee Gabriela Hearst; model and actress Lauren Hutton; Save the Children President & CEO Carolyn Miles; Save the Children Senior Vice President, U.S. Programs & Advocacy Mark Shriver; and CEO of Corbin Capital Partners and Gala Co-Chair Tracy Stuart, among others.

For more information and additional news, please visit

Save the Children gives children in the United States and around the world a healthy start, the opportunity to learn and protection from harm. We invest in childhood — every day, in times of crisis and for our future. Follow us on Facebook, Instagram and Twitter.

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Families Aid Discovery Of A Sensory-Processing Disorder Gene In Children With Autism Traits

Press Release – JUPITER, FL—Nov. 26, 2018—A concerned Texas mom finally has answers about the cause of her son’s sensory-processing problems thanks to a special collaboration among her patient-advocacy group and the lab of Scripps Research Neuroscientist Gavin Rumbaugh, PhD.

Monica Weldon of Cypress, Texas, says her son Beckett, a 10-year-old fraternal twin, has never experienced pain the way his sister, or other children, do.

“His pain threshold was so high,” Weldon says. While he had signs of autism, he had other symptoms that were not typical. “He walked around with a broken finger for four days and we didn’t know it was broken.”

Beckett has a genetic mutation that results in deactivation of a gene called SYNGAP1, which is critical to healthy brain development. Rumbaugh’s research, published in the journal Nature Neuroscience, for the first time links disordered touch and pain processing to SYNGAP1 mutations. Rumbaugh and his co-authors note that children born with only one working copy of the gene are known to exhibit a wide range of symptoms, including autistic traits, epilepsy and intellectual disability. Analysis of a patient registry that Weldon helped assemble, plus a series of experiments in an animal model of the condition, led to the discoveries.

“We knew SYNGAP1 was critically important for synapse plasticity,” or experience-driven changes in neural circuitry, says Rumbaugh, the study’s senior and corresponding author. “What we found is in addition to that, it also seems to regulate how many connections are made in the brain’s primary somatosensory cortex, in how we process touch-related sensory information. That was a surprising finding.”

It was surprising, in part, because previous research showed that SYNGAP1 mutations cause hyper-sensitivity in the other senses. The processing of hearing and sight may be on overdrive, and yet they found that touch awareness and pain sensation barely register in somatosensory circuits.

Weldon says that paradox describes her son’s challenges exactly. While he ignored dog bites or skin burns, the sights and sounds of a simple trip to the grocery store overwhelmed him.

“Nothing could relieve him of the over-stimulation,” she says. “He was constantly screaming in the car. You couldn’t go anywhere because of the screaming. We had ear plugs in the house.”

That paradox may also may explain why it’s challenging for doctors to prescribe medications to regulate the children’s symptoms, Rumbaugh says.

Many different mutations can lead to inactivation of one copy of the SYNGAP1 gene, Rumbaugh says. Two inactivated copies of the gene are lethal in the laboratory, he adds. The next step will be developing therapies to restore the missing SYNGAP1 gene product, he adds. That work is underway at Scripps Research in Jupiter, FL now. He’s hopeful that catching the disorder and treating it early may make it possible to prevent some of the developmental and intellectual disabilities, or to avoid the seizures.

“We think that it’s likely that the sensory deficits that these children experience contribute to their altered learning and thinking,” he says. “If the who, what, where, and when information is coming in incorrectly, you would expect it is going to affect behavioral responses to touch, as well as thought processes that are generated from touch experiences.”

For Monica Weldon, learning the source of her son’s developmental challenges has been life-changing. A former science teacher, she shares authorship of the Nature Neuroscience paper. The patient-advocacy group she founded, Bridge the Gap – SYNGAP – Education and Research Foundation, has spent years working with Rumbaugh’s lab to build a scientifically valid patient registry, and develop and distribute questionnaires.

Weldon recalls the difficulty of learning why Beckett was so different from his twin. The identification of the SYNGAP1 gene as disease-causing wasn’t discovered until Beckett was 1 year old. She visited more than a dozen doctors trying to find a cause. She finally had to take out a loan to pay the $13,000 whole-genome exome test that her doctor ultimately suggested. On learning of Beckett’s status, she created the firstSYNGAP1 Facebook page in the hopes of finding others. That group eventually grew into the non-profit. Beckett and his sister are 10 years old now. Nearly 200 families have joined the patient registry used for the study, and 48 different families uploaded detailed medical history data, including answering detailed questions about sensory function in their children. Of those, 45 of 48 described obvious sensory processing impairments, Rumbaugh says.

SYNGAP1 mutations are rare, but recent studies have estimated that tens of thousands of individuals globally may live with it, Rumbaugh says. Families learn of their child’s SYNGAP1 status only after pediatricians notice missed milestones and then order genetic tests, he adds.

Thanks to the internet and Bridge the Gap, families are finding each other and sharing such vital information. The new findings show how powerful these connections can become when families partner with scientists like those at Scripps Research, Weldon adds.

“The families educate the scientists on the specifics of how their children are affected, and they educate us on how the gene mutations impair brain function at the cellular and molecular level—it’s a win-win for everybody,” Weldon says.

“This open communication is getting us closer to understanding what this gene really does and possibly developing precision medicine approaches for treating these kids.”

In addition to Rumbaugh and Weldon, authors of the study, “SYNGAP1 heterozygosity disrupts sensory processing by reducing touch-related activity within somatosensory cortex circuits,” include first authors Sheldon D. Michaelson and Emin D. Ozkan of Scripps Research. They also include Massimiliano Aceti, Sabyasachi Maity, Nerea Llamosas, Elisa Mizrachi, homas Vaissiere and Courtney A. Miller, of Scripps Research; Michael A. Gaffield and Jason M. Christie of the Max Planck Florida Institute for Neuroscience, and J. Lloyd Holder Jr. of the Baylor College of Medicine.

This work was supported in part by NIH grants from the National Institute of Mental Health (MH096847 and MH108408 and MH105400), the National Institute for Neurological Disorders and Stroke (NS064079 and NS083894), and the National Institute for Drug Abuse (DA034116 and DA036376). J.L.H. is supported by a National Institute for Neurological Disorders and Stroke Mentored Clinical Scientist Research Career Development Award (NS091381). The SYNGAP1 Natural History Study and Patient Registry is supported by a grant from The National Organization of Rare Disorders.

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Noted Water Strategy Expert Will Sarni To Serve on Project WET Foundation Board of Directors

Press Release – BOZEMAN, Mont., Dec. 7, 2018 /PRNewswire/ — Will Sarni, a global thought leader on water strategy and innovation, has joined the Project WET Foundation Board of Directors. The founder and CEO of Water Foundry, which advises companies on water-related risks and invests in digital water technologies that address water scarcity and quality issues Will becomes the ninth member of the global water education nonprofit’s Board of Directors.

“Will Sarni is an internationally recognized water sustainability expert known for his ‘out-of-the-box’ thinking and practical solutions for solving the complex water issues facing our world,” said Tom Cooper, Project WET Foundation Board Chair and Senior Environmental Health and Safety Manager for Lam Research Corporation. “We are absolutely thrilled to have him join us as a board member, and we look forward to having Will’s help in furthering our mission of educating the world about water.”

Before launching Water Foundry Will founded and led DOMANI, a sustainability strategy firm that was acquired by Deloitte Consulting. At Deloitte, he founded the water strategy practice which provided services to U.S. and non-U.S. multinationals on quantifying and mitigating water-related risks.

Will has authored numerous books and articles and presented on such topics as the value of water, innovations in digital water technology, the circular economy and the energy-water-food nexus. He is also the author of a forthcoming book, Digital Water: New Technologies for a More Resilient, Secure and Equitable Water Future, which Routledge will publish in 2019.

Will joins a Board that reflects the Project WET Foundation’s core beliefs that water is for all water users and that water resources management and education are crucial to a healthy and sustainable environment and economic prosperity. All water user categories and diverse geographic regions as well as government agencies and private enterprise are represented. Other members of the Board include a NASA astronaut recently returned from the International Space Station, senior executives from the mining and semiconductor industries, a university water education expert, and retired leaders from Black & Veatch, Nestlé Waters, USAID and USDA.

About the Project WET Foundation:

Since 1984, the Project WET Foundation has been dedicated to reaching children, parents, teachers and community members with action-oriented water education to enable every child to understand and value water, ensuring a sustainable future. Project WET (“WET” stands for “Water Education for Teachers”) is active in all 50 U.S. states and more than 70 countries worldwide. Learn more at

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Bonnaroo Works Fund Supports Organizations Committed To Advancing Local Arts, Education And Environmental Causes With $236,000 In Grant Funding

Charitable Component of Bonnaroo Music and Arts Festival Names 40 Recipients of 2018 Grants

Press Release – NASHVILLE, Tenn. –December 5, 2018Bonnaroo Works Fund (BWF), the charitable arm of Bonnaroo Music & Arts Festival, has announced its annual grant distributions. This year, BWF awarded $236,000 to 40 nonprofit organizations that spearhead Tennessee-based initiatives that support the Fund’s mission of advancing arts, education and environmental causes.

“I’m looking forward to engaging with the vibrant group selected as this year’s grant recipients,” said Kelsey Dewald, the newly named executive director of BWF. “Their invaluable work allows the festival’s commitment to positive community impact to be felt year-round, and the contributions they make are vital to people who need and depend on our support most.”

The Bonnaroo Works Fund is a 501(c)3 nonprofit organization that supports organizations that advance the arts, education and environmental sustainability, with a focus on local reinvestment and asset building in the communities where “we work, live and play.” Since the inception of the festival, Bonnaroo and the BWF have awarded more than $7 million in funding to deserving organizations. (The full list of 2018 recipients is included below.)

The powerful effect of the BWF can be seen through a number of ongoing programs and projects in collaboration with organizations, such as Notes for Notes, which is dedicated to providing youth with completely free access to music instruments, instruction and the recording studio experience so that music may become a profoundly positive experience in their lives; Historic Tennessee Theatre Foundation, which offers arts education opportunities and world-class performances to children from low-income families; and The Nashville Ballet, whose Adaptive Dance Program invites differently abled youth to embark on an inclusive dance journey that supports their belief that arts and dance can be beneficial to everyone.

The BWF is a joint effort between Bonnaroo organizers and attendees, with a portion of ticket sales allocated to the BWF. In addition, proceeds from festival activities, such as the Silent Auction, Root for Roo, the Bonnaroo 5K Run, and the Les Paul Spirit Awards, all benefit the Bonnaroo Works Fund and, in turn, its grant recipients.

Bonnaroo Works Fund is administered by the Community Foundation of Middle Tennessee. Grants are selected based on a variety of criteria and approved by the board of directors. Previous recipients are welcome to reapply each year, but the BWF is always seeking new applicants with innovative approaches to supporting the core missions of the BWF. The next grant cycle will run from June to August of 2019.

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Statement From Fistula Foundation CEO Kate Grant On The December 10 Nobel Peace Prize Awarded To Dr. Denis Mukwege

On December 10, an extraordinary person and personal hero will receive the 2018 Nobel Peace Prize. It is an award much deserved by a man who has put his own life at risk, for decades, in order to aid the voiceless victims of wartime violence.

I have been privileged to know Dr. Denis Mukwege for nearly a decade. When Fistula Foundation adopted a global mission in 2009, he became our very first partner. We have been proud to support his work with more than $2.3 million in grants that help him restore health to thousands of women who have suffered from traumatic fistula incurred as a result of sexual violence.

Since the announcement in October that he would receive the 2018 Nobel Peace Prize, Fistula Foundation has established the Denis Mukwege Fistula Fund to support his future work, for which nearly $200,000 has already been raised. Our community has also celebrated this news, sending in more than 700 messages of congratulations, well wishes and support via an e-card that Fistula Foundation established, which now features signatures from grateful champions of his work from 36 countries around the world.

He is truly a remarkable man, and it has been a pleasure to get to know him well over the last decade. The son of a Pentecostal minister, Dr. Mukwege is a quietly devout man who told me at our very first meeting that he wanted to do with his hands what he felt that his father had done with his words: make the world a better place.

And he truly has. His 400-bed Panzi Hospital is a beacon of healing and hope to women who have been traumatized by decades of war. It has been said that the Democratic Republic of the Congo is the worst place in the world to be a woman, and if you hear Dr. Mukwege share stories of women and young girls whose bodies have been literally torn apart by sexual violence, you will know this is true. He and his staff work day and night to heal these voiceless victims, body and soul.

What Dr. Mukwege does is important, and dangerous. He is a global force, using his voice beyond the walls of Panzi Hospital to speak on the world stage to denounce the crimes of armed groups that have operated in DRC for more than two decades. He has been targeted by assassins who took his daughters and wife captive. Yet, this remarkable man and champion of women perseveres.

Every day, he serves as my North Star. His portrait has hung on the wall next to my desk for nearly as long as I’ve known him. In a white doctor’s coat and a lapel pin that says “Do not stand idly by,” he reminds me every day of the sacrifices he’s made to give the voiceless a voice, and to return their health and their hope.

In this age, and at this time, the Nobel Committee could not have selected a more deserving, more inspiring recipient. I could not be proud to call him a partner, and a friend.

To join the 700+ others around the world who have already left a message for Dr. Mukwege on Fistula Foundation’s e-card, add your name and message at this link. Messages will be compiled and delivered to Dr. Mukwege after the Nobel Ceremony on December 10.

Fistula Foundation believes no woman should suffer a life of isolation and misery simply for trying to bring a child into the world, which is why we are dedicated to ending the suffering caused by obstetric fistula. We’re working with local partners in more than 20 countries, funding more fistula repair surgeries worldwide than any other organization. Based in San Jose, California, in the heart of Silicon Valley, Fistula Foundation is honored to have received 13 consecutive four-star ratings from Charity Navigator; only 1 percent of charities have received this designation.

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Carroll Shelby Foundation Names Rafella Golden As New Managing Director

Press Release – GARDENA, Calif. – Dec. 7, 2018 – Rafella Golden has been promoted to Managing Director of the Carroll Shelby Foundation by the charity’s Board of Directors. In this new position, Ms. Golden will manage the daily operations of the non-profit founded by legend Carroll Shelby.

“Carroll Shelby believed that any goal could be achieved with a team of dedicated people,” said Mr. Cummings. “While he was committed to success in every aspect of life, Carroll was especially passionate about helping kids. Ms. Golden has earned this promotion through her dedication to the Foundation that Carroll started. The charity board of directors looks forward to working with her to continue Carroll’s mission to help kids in the race for life.

Ms. Golden has been part of the Shelby community since 2009, when she first began to work for Carroll Shelby International. Previously she worked in public school fundraising, event coordination and retail design for a variety of organizations.

Since joining Shelby, Ms. Golden has been involved in many different roles for Shelby American, Team Shelby, Carroll Shelby’s Store, Carroll Shelby International and the Carroll Shelby Foundation. She has managed graphic design projects, coordinated events, been a merchandise buyer, contributed to strategic planning and directed retail locations. But it was a personal connection with Mr. Shelby that eventually led to her involvement with the charity.

“Not long after I joined Shelby, my teenage son was diagnosed with brain cancer,” said Ms. Golden. “I’ll never forget how supportive Carroll was during that challenging time for my family. He also gave me the opportunity to be involved with the children’s charity as a way to help other kids in honor of my son’s full recovery. Over the years, my role has evolved and led me to this opportunity to make a difference for families through the Carroll Shelby Foundation.”

Ms. Golden will fill a dual role as both Managing Director of the charity and will still remain part of the Team Shelby management team. This unique position will allow her to maximize opportunities for the charity to integrate into Shelby American and the international club’s events.

“We’ve been impressed with Rafella’s tenacity and drive during her tenure with Shelby,” said Aaron Shelby, Carroll Shelby Foundation Co-President. “She has channeled her talents into executing programs for organizations that we support including the Loma Linda University Children’s Hospital, The Eli Home, Texas Children’s Hospital in Houston and the Carroll Shelby Automotive Technology Program in East Texas. We’re confident that Rafella will do a terrific job as Managing Director of the Carroll Shelby Foundation.”

Following years of heart-related difficulties that culminated in a successful heart transplant, legendary racer and automaker Carroll Shelby created the Carroll Shelby Children’s Foundation in 1991. Shelby, who waited years before receiving his transplant, was keenly aware of the difficulties and expense involved in heart surgery and the often-lengthy process to locate a suitable donor organ. He created the Foundation because he realized that many needy children would have their lives cut short without some type of financial assistance.

The organization was initially dedicated to providing this assistance for acute coronary and kidney care for young people. In 2009, the Foundation expanded its mission and now helps kids from their first heartbeat through their education years.

As a 501 (c) 3, funding for the Foundation comes from a myriad of sources. These include donations from corporate and private sponsors, Ford Motor Company and through club events.

To date, the Carroll Shelby Foundation has helped charities and children worldwide. The organization has raised money for fundraising campaigns and provided seed monies to launch healthcare programs and facilities. The charity provides grants to organizations conducting research in the fields of coronary and organ transplant management. It also provides scholarship money to kids for continuing educational opportunities in the automotive field. Recent donation recipients from the Carroll Shelby

  • Loma Linda University Children’s Hospital
  • The Eli Home
  • Texas Children’s Hospital in Houston
  • The Carroll Shelby Automotive Technology at the Northeast Texas Community College
  • Children’s Hospital Los Angeles
  • Children’s Organ Transplant Association (COTA)
  • Children’s Mercy Hospital in Kansas City

About The Carroll Shelby Foundation

The Carroll Shelby Foundation was created by legendary racer and automotive manufacturer Carroll Shelby. Headquartered in Gardena, Calif., the Foundation is dedicated to providing medical assistance for those in need, including children, educational opportunities for young people through automotive and other training programs and benefitting the Shelby Automotive Museum. For more information visit

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