Recognizing the ethical obligation that all lawyers and law firms have to provide service to indigent clients and not-for-profit organizations, the firm increasingly handles matters on a pro bono basis that apply our professional skills, creativity and influence.
The Food Allergy Science Initiative (FASI) launched in 2016 at the Broad Institute of MIT and Harvard in partnership with a group of Boston-area parents whose families have been affected by food allergies. Together, they sought to advance knowledge of the biological basis of food allergy, which affects more than 30 million Americans. Despite the prevalence of food allergy, very limited progress in treatment has been made over the past 40 years. Since its founding, FASI has made tremendous progress pioneering new research directions in food allergy, attracting talented young researchers, facilitating scientific and public outreach about allergy, and nurturing the food allergy community. The collaborative, multifaceted initiative now spans world class labs across the US.
In early 2021, FASI announced the beginning of a new era as a separate, independent organization dedicated to discovering the root causes of food allergies through rigorous scientific research and deploying new therapies to treat and, ultimately, cure them. As an independent nonprofit, FASI will build upon the research progress made at the Broad and partner institutions under the leadership of Ruslan Medzhitov, FASI’s chief scientific officer. The new entity will also build on significant financial support that FASI has garnered to date from philanthropists and foundations, including a recent grant from Food Allergy Research and Education. Additional support will be directed to further foundational science that is shared openly with researchers around the globe, rather than developing one particular therapy or treatment to address one type of allergy. In order to continue funding transformative food allergy research, FASI has set a goal of raising an additional $50M over the next five years.
Faber lawyers have been advising FASI about operational aspects of establishing as an independent organization, including structuring ties to partner institutions, leading food allergy researchers, and the venture community. www.foodallergyscience.org
In summer 2020, as the world reacted in horror to the death of George Floyd at the hands of Minneapolis police officers, Rose Barboza turned her sadness and anger into action by launching Black Owned Maine, as a simple online directory of Maine businesses owned by Black people. Through BOM’s first six months, Mainers have taken advantage of the directory to work with businesses they may not have known of previously. In the meantime, the vision for Black Owned Maine has expanded dramatically. The organization has an impressive social media following, and Edwards has begun producing the Black Owned Maine podcast, with three episodes out so far. They’ve begun accepting donations from the community, thanks to support from Creative Portland. They’ve sold merch and they’ve given out grants to Black-owned businesses that have been affected by the pandemic, as well as to families that are struggling to make ends meet. The grant applications are intentionally simple and straightforward, so as not to create a burden on people who are already stressed. Going forward, Barboza wants Black Owned Maine to become an even more integral resource for businesses that don’t often get the spotlight—as well as for up-and-coming entrepreneurs. BOPM are planning to build out the website so it contains all the information an entrepreneur needs to start a business in Maine. That information will be accessible to anyone, though of course the target will be entrepreneurs of color. In addition, they aim to create a business incubator and mentoring program, while also offering for-profit marketing and media services. “This is a social change project that turned into something much bigger,” says Barboza—and Maine is better as a result.
6-7 lawyers, contracts specialists and firm operations staff at Faber have strong ties to Maine, and several have been advising BOM about the design of the business incubator and mentoring program, and potentially acquiring dedicated space in southern Maine. www.blackownedmaine.com
Heterogeneous nuclear ribonucleoprotein H2 (HNRNPH2) is a gene on the X chromosome in humans. In recent years, genetic mutations of HNRNPH2 have been identified in children, mostly girls (>85%). The mutations result in life-altering neurodevelopmental conditions including developmental delay, intellectual disability, autism, hypotonia, and seizures, among other characteristics. Variants in HNRNPH2 also seem to affect other organ systems in the body aside from the brain. Just under 80 cases of the mutation are currently known.
The Yellow Brick Road Project (YBRP) is a charitable foundation whose mission is to fund research to identify, understand, treat, and ultimately cure those impacted by HNRNPH2 mutations. It does this by funding initiatives to identify more individuals with HNRNPH2 mutations, connecting families impacted by HNRNPH2 in order to contribute to the understanding of the disorder, raising awareness of HNRNPH2 mutations in the general public and scientific communities, and by funding research into HNRNPH2 mutations.
In 2020, Faber represented YBRP in negotiating a grant agreement with Andlit Therapeutics, an Israeli biotech company. Under the agreement YBRP will fund Andlit to 1) research the expression of the disorder at the cellular level including analysis of variants to learn if there is a gain or loss of function, and 2) explore possible avenues for treatment, targeting therapies based on the results of the stage 1 analysis.
More information on YBRP can be found at www.yellowbrickroadproject.org.
Cure GM1 Foundation is a nonprofit organization dedicated to finding a cure for GM1 Gangliosidosis, a rare disease that robs children of necessary bodily functions and skills. This autosomal recessive lysosomal storage disease attacks the brain and spinal cord, causing the body to produce insufficient amounts of the enzyme beta-galactosidase. GM1 is a degenerative condition and includes a wide range of life-altering symptoms and complications. Children diagnosed with GM1 often lose the ability to speak and swallow, as well as movement of their limbs. Loss of sight and hearing are also commonly associated with this debilitating disease. Weakened immune systems and respiratory complications make GM1 patients highly susceptible to pneumonia, resulting in alarmingly high fatality rates among children.
With hopes of ending the suffering of children with GM1 by finding a therapeutic treatment, a group of parents formed the Cure GM1 Foundation. The organization provides funding for various research initiatives, including lentiviral gene therapy, enzyme replacement therapy, and AAV gene therapy. Faber provides transactional support for the foundation’s goals, which includes working with academia and industry to bring together organizations that have relevant scientific interests and assets for this disease space. We help the organization strategize the most appropriate use of funding it receives, as well as funding it gives out, to achieve its overarching goal of finding a cure.
Faber recently helped the not-for-profit Partners in Health (PIH) negotiate contracts for several clinical trials in Eastern Europe and Africa. One of the projects, “endTB,” seeks to alter the way in which multi-drug-resistant TB is managed worldwide. It’s a collaboration involving PIH, Médecins Sans Frontières (Doctors Without Borders), Interactive Research and Development, and financial partner UNITAID. Faber also drafted clinical trial agreements for a multi-center trial that focused on expanded access to Hepatitis C treatment in Rwanda. PIH is a non-profit organization dedicated to bringing quality healthcare to the world’s poor and medically underserved populations through community-based efforts.