Welcome from the President

At Genetic Alliance, 2009 was a year of celebration, refocus, dedication, and explosion. We did more than take systems to the next level – we used openness to release the energy that transforms systems. We blew them up, re-envisioned what success looks like, and used the lens of genetics to focus on health itself.

Now, we move into the new decade understanding the value of innovative partnerships. There is a benefit to challenging times; as a community we begin to understand that both our productivity and our potential for success depend on collaboration. 

Join us, collaborating in openness, to create meaningful partnerships that advance science, policy, translation, and treatments. Novel partnerships will fuel our success as a community!

Sharon Terry, for the Council and Staff of Genetic Alliance

Annual Conference Registration Now Open!

Advancing Novel Partnerships, Genetics Day on the Hill, and Gene Screen!

Join us July 15-18 for stimulating new additions to the agenda: simultaneous dinner debates and open space sessions. Don’t miss old favorites: workshops covering a range of relevant topic areas, in-depth daylong symposia, and an atmosphere that fosters openness and collaboration.

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Submit your films to the 2^nd Annual Gene Screen: A Night of Film on Health and Genetics! Films of any length are accepted, and must relate to health or genetics. Check out our video request for submissions for some inspiration.

Ashoka Fellow

Sharon Terry was recently announced as an Ashoka Fellow for improving health outcomes for patients who have genetic diseases by aligning incentives and structures so that they facilitate, rather than obstruct, the continuum of research, drug development, treatment, advocacy, and support. Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world’s citizens to think and act as changemakers. Working in over 60 countries around the globe in every area of human need, Ashoka Fellows demonstrate an unrivaled commitment to bold new ideas through a combination of compassion, creativity and collaboration. Fellowship is a distinguished lifelong position attained only after a rigorous selection process.

Spotlight: BioBank Grant

We invite disease-specific organizations to apply for a $20,000 grant, which will fund entry into the Genetic Alliance BioBank. The BioBank is an advocacy-owned and controlled repository for biological samples and clinical data that enables translational genomic research. We provide registry and repository solutions and infrastructure for disease advocacy organizations to pursue sophisticated, novel research collaborations with academia and industry to accelerate research, develop new diagnostics and therapeutics, and better understand and treat disease.

Eligible organizations must submit applications by May 1, 2010.

Applications from collaborative organizations and consortiums are encouraged!

Capitol Corner

Genetic Alliance applauds Congress for taking a monumental step toward improving health systems to better meet the needs of individuals and families. This week, the House of Representatives passed a comprehensive health reform package that included The Patient Protection and Affordable Care Act, which the Senate passed in late December, and President Obama signed it into law. The passage of healthcare reform is the culmination of heated debates and consideration of multiple proposals, underscoring the commitment of Congress and federal health agencies to advance research, healthcare, and public health systems.

But there has been even more activities in addition to healthcare reform: It was an action-packed winter and spring! The promises of the American Recovery and Reinvestment Act have come to fruition: President Obama announced an unprecedented $5 billion commitment to the NIH to support biomedical research, and we keep getting closer to implementing a nationwide health IT infrastructure that empowers individuals and families and the health systems that serve them. As we collaborate with Congress to ensure momentum is not lost in this time of increasing need, Genetic Alliance turns to novel partnerships within the health community to implement change NOW. We have before us an unparalleled opportunity: we have new leadership in our health agencies (US Surgeon General Regina Cameron, NHGRI Director Eric Green); new programs (The Hunter Kelly Newborn Screening Research Program); new freedoms (the Genetic Information Nondiscrimination Act in full effect); new funding (President Obama released his FY 2011 budget proposal on February 1); and a new commitment to openness and transparency (the OSTP blog, FDA Basics). We have more tools and outlets for idea generation and sharing than ever before. Let us launch into the spring season poised for collaboration, modeling the change we seek from health reform.

Newborn Screening News

Congenital Conditions Program
This program, funded through a cooperative agreement with HRSA, will collect and disseminate evidence-based information while coordinating the availability of supportive services for parents whose child receives a diagnosis prenatally, at birth, or up to one year after birth. We will develop awareness and educational models for healthcare providers who are responsible for delivering and interpreting confirmatory diagnosis results for parents. These models will be replicable, sustainable mechanisms for patient and provider education that can be adapted and applied to other conditions.

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Newborn Screening Summit: Envisioning a Future for Newborn Screening
In December 2009, more than 200 health professionals, family members, and others participated in the Newborn Screening Summit to discuss how long-standing state public health programs can evolve to keep up with new technology, societal and governmental trends, and medical advances. The Summit promoted dialogue among all stakeholders in newborn screening, making everyone feel valued, and identified actionable steps for the improvement of the system. The videotaped proceedings can now be accessed at: www.geneticalliance.org/nbs.summit.

 

Staff News

Mark Petruniak, Technology Program Assistant, joined Genetic Alliance in October 2009 after graduating from American University. He seeks to combine his background in documentary filmmaking, international issues, and web development to promote new visions of healthcare inspired by collaboration and openness. He contributes to the daily process of conceptualizing innovative systems and implementing new technologies, provides logistical support around the office, and leads Genetic Alliance video production.

Ann Waldo, JD, CIPP, Senior Counsel, came on board in November 2009. She is well known in the genetics and health community. Her expertise includes privacy, gene patenting, genetic discrimination, newborn screening, and health Information technology. Ann also serves as partner in the law firm of Oldaker, Belair, and Wittie, LLP, providing counsel and advocacy on privacy and information management, with special focus on HIPAA and consumer protection health privacy. Ann graduated from The University of North Carolina School of Law with high honors in 1995 and holds a bachelor of the arts degree in religion from Ohio Wesleyan University. She welcomes the opportunity to assist Genetic Alliance with its public policy mission.

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Thank you to our fall interns! Genetic Alliance interns serve as crucial members of our team - they provide support and valuable input, help shape our programs, and contribute innovative project ideas for resources, tools, and applications to be used by the genetics and health community.

Holly Babcock, Programs Intern
Mariah Duffy, Health Policy Intern
Tanya Khan, Programs Intern
Tierney Mancuso, Programs Intern