{"id":31065,"date":"2018-11-27T10:21:41","date_gmt":"2018-11-27T15:21:41","guid":{"rendered":"https:\/\/www.wework.com\/creator\/creator\/?p=31065"},"modified":"2020-02-26T14:28:33","modified_gmt":"2020-02-26T19:28:33","slug":"nonprofits-innovative-investing-helps-cure-a-childhood-disease","status":"publish","type":"post","link":"https:\/\/www.wework.com\/ideas\/community-stories\/member-spotlight\/nonprofits-innovative-investing-helps-cure-a-childhood-disease","title":{"rendered":"Nonprofit&#8217;s innovative investing helps cure a childhood disease"},"content":{"rendered":"\n<p><span style=\"font-weight: 400;\">It takes most nonprofits dedicated to finding a cure for debilitating diseases\u2014like cystic fibrosis or, in the case of the federal government, HIV\/AIDS\u2014decades to discover a breakthrough treatment or get a drug approved, often after raising billions of dollars. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">The <\/span><a href=\"https:\/\/www.ebresearch.org\/\"><span style=\"font-weight: 400;\">EB Research Partnership<\/span><\/a><span style=\"font-weight: 400;\"> is on its way after only nine years.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Epidermolysis bullosa, or EB, is a potentially deadly genetic skin condition. Those afflicted are missing an essential protein that binds the skin\u2019s layers\u2014without it, the skin blisters and tears, leading to severe pain, permanent scarring, and disfigurement. Because there is no cure, doctors typically tell parents of children born with EB (<\/span><a href=\"http:\/\/www.debra.org\/aboutDebra\"><span style=\"font-weight: 400;\">1 in 200 American babies<\/span><\/a><span style=\"font-weight: 400;\"> each year) to try to make life as normal as possible. That can mean spending hours every day wrapping sores with bandages to prevent infection. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">EB Research Partnership\u2019s progress\u2014$25 million raised and 50 research projects funded, half of which are active\u2014is the result of its innovative venture-philanthropy model that cofounder Alexander Silver says was \u201cborne out of a mistake I swore we\u2019d never make again.\u201d<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Soon after their son, Jackson, was born with a severe form of EB in 2007, Alexander and his wife, Jamie, created the Jackson Gabriel Silver Foundation to fund research to help find a cure for the disease. It didn\u2019t take long for the family to realize they had made a mistake adopting a traditional nonprofit model\u2014relying on grants to fund research\u2014after the foundation\u2019s first project ended up in limbo due to organizational disarray. <\/span><\/p>\n\n\n\n<figure class=\"wp-block-image alignnone wp-image-31073 size-full\"><img decoding=\"async\" src=\"\/ideas\/wp-content\/uploads\/sites\/4\/2018\/11\/EB-Research-Partnership-800x571.jpg\" alt=\"\" class=\"wp-image-31073\"\/><figcaption>(Above) A child with Epidermolysis bullosa, a potentially deadly genetic skin condition. (Top) Pearl Jam singer Eddie Vedder was an early supporter of the EB Research Partnership.<\/figcaption><\/figure>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWe lost five years,\u201d Silver, 41, says. \u201cAnd in the context of somebody who lives with severe EB, whose life expectancy may be 25, 30 years, it\u2019s unconscionable.\u201d<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">In 2014, the Jackson Gabriel Silver Foundation teamed up with Heal EB, a nonprofit founded by the parents of another young EB-afflicted boy who were also trying to find a cure. With the help of supporters like Pearl Jam singer Eddie Vedder and his wife, Jill (who was the childhood neighbor of the boy\u2019s father), the EB Research Partnership was founded. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">From the start, the organization, based at New York City\u2019s <\/span><a href=\"https:\/\/www.wework.com\/buildings\/575-fifth--new-york-city--NY\"><span style=\"font-weight: 400;\">WeWork 575 Fifth<\/span><\/a><span style=\"font-weight: 400;\">, broke the traditional nonprofit mold by using \u201cventure philanthropy,\u201d which focuses on raising capital to drive innovation. Venture philanthropy uses finance and business practices to generate a return on investments from traditional nonprofit methods like donations. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Here\u2019s how it works: When the nonprofit awards a grant to a project, it retains intellectual-property rights. When a public company uses that IP to develop a treatment, EBRP receives stock in the company. If the stock grows beyond the original investment, the revenue funds more research to accelerate cures for EB. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cThe early investors at Google didn\u2019t just simply hand off their economics to the next party,\u201d says Silver, a partner at New York investment firm P2 Capital Partners. \u201cFor some reason, it\u2019s the belief that the nonprofit sector should, and we just don\u2019t fundamentally accept that.\u201d<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Additionally, all EBRP agreements include a license that enables the organization to move the IP to another commercial party if the current one fails to move forward.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWe\u2019re very cognizant that the therapy goes first, with or without the partner company,\u201d says Silver.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">EBRP could have selected another investment model, like impact investing, but \u201cwe don\u2019t want to ever be in a position where we have to turn something down that could cure the disease because of an investor return,\u201d says executive director Michael P. Hund.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">The organization\u2019s use of venture philanthropy to save children\u2019s lives is gaining attention: In November 2018, EBRP was awarded a partnership with the Harvard Business School Club of New York, a fellow WeWork member based at <\/span><a href=\"https:\/\/www.wework.com\/buildings\/1460-broadway--new-york-city--NY\"><span style=\"font-weight: 400;\">WeWork 1460 Broadway<\/span><\/a><span style=\"font-weight: 400;\">. Its team of volunteers conducts a deep dive into the organization\u2019s strategic plan. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Lisa Goldman Forgang, co-chair of social-enterprise programs and community partners at HBSCNY, says the organization was impressed with EBRP\u2019s innovative business model and its ability to leverage their grants as investments. \u201cWe\u2019re just hoping to be able to help them get out their success and stories even more and identify new potential donors that would really be supportive to this mission and this model,\u201d she says.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">The more success the nonprofit sees\u2014it enjoyed a $6 million return on a $500,000 investment in a gene therapy made three years ago\u2014the more hopeful those affected by EB are of finding a cure. And as EBRP\u2019s venture-philanthropy model proves viable, it can be applied to other incurable rare diseases. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWhy would we write these big checks to these big institutions and just hope for the best?\u201d says Hund. \u201cThat just didn\u2019t make sense to Alex, and it doesn\u2019t make sense to me. There\u2019s a better way.\u201d <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>With supporters like Pearl Jam&#8217;s Eddie Vedder, the EB Research Partnership finds success with venture philanthropy<\/p>\n","protected":false},"author":1699,"featured_media":35028,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[43903,43911],"tags":[513,39218],"class_list":["post-31065","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-stories","category-member-spotlight","tag-innovation","tag-small-businesses"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v22.4 (Yoast SEO v25.3.1) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Nonprofit&#039;s innovative investing helps cure a childhood disease<\/title>\n<meta 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