Dear all,

An exciting summer has given way to a packed fall. We keep anticipating down time or a slow period, but it seems that the whole community is fired up and ready to go!

Since the last issue of this publication, all of the HHS agencies have new directors, and we are excited to work with them. The latest of these, Francis Collins, graced our annual meeting with a lecture and sing-along. Genetic Alliance staff and Council are at work on many HHS committees. It is thrilling to be part of so much forward movement in health information technology, newborn screening, family history, translational research, comparative effectiveness, and genetic testing. We are eager to accelerate it all and appreciate working with you!

We spoke at our annual meeting about getting "BIG". Let's all step forward as a WE, without conventional boundaries, and drop our own agendas to focus on a much bigger "what matters". Invitations to do this are all around us, we only need to look at those who suffer. We look forward to the continuation of the "yes we can" energy that got us this far and the immense changes we will see as a result.

Sincerely,

Sharon Terry, for the Council and staff of Genetic Alliance

The 2009 Genetic Alliance Annual Conference was a celebration of openness and an invitation to the community at large to abandon turf so that we can achieve truly productive transformation, of the health system and health itself - and it was a resounding success! Join us as we push boundaries even further in 2010.

SAVE THE DATES!

Genetics Day on the Hill
July 15, 2010

Gene Screen: A Night of Film on Health and Genetics
July 15, 2010

2010 Genetic Alliance Annual Conference: Advancing Novel Partnerships
Bethesda North Marriott Hotel and Conference Center
July 16-18, 2010

Check out our 2009 events so you know what to expect in 2010!

Call for Abstracts

Genetic Alliance is now accepting abstracts submissions for the 2010 Annual Conference: Advancing Novel Partnerships. Abstract submissions must be related to genetics and relevant to at least one of the listed content areas in the guidelines. Presentations should include at least 30 minutes of audience interaction. Each presentation must include 2-3 speakers, each representing a different perspective. Get more information and submit your abstract today!

Deadline for abstract submission: November 23, 2009

Call for Award Nominations

Do you know a healthcare professional who deserves recognition for all s/he has done?

Have you been interviewed or read a wonderful piece by a creative journalist who furthers public understanding of genetics and/or disease?

Have you worked with a company that embodies meaningful collaboration?

Nominate them for a Genetic Alliance Award today!
Deadline for nominations: November 2, 2009

The new and improved Resource Repository is an electronic collection of documents, links, and audio and video files that serves as a digital commons for the genetics and health community. Features include the ability to track content tailored to your interests, view the most recently uploaded and most often downloaded content, and an easy submission process to add your own materials. Check back frequently to see how the Resource Repository grows and contribute by uploading resources: www.resourcerepository.org

The Does It Run In the Family? online tool helps you create customized family health history resources for your family, organization, or community. The tool allows you to customize two booklets, "A Guide to Family Health History" and "A Guide to Understanding Genetics and Health", with:

- personal health stories
- photographs
- quotes
- interview questions
- disease information
- health resources

Communication is the key to unlocking your family health history, and these personalized booklets help start conversations about health with your family, healthcare provider, and community. Visit www.familyhealthhistory.org to start your own booklets.

The Trust It or Trash It? Quality Assessment Toolbox can be used by families and health professionals to judge the quality of materials about genetic conditions (such as booklets, websites, and handouts). You can also use it to help create new quality materials about genetic conditions. The Toolbox contains three scales: the Quality Scale, Content Scale, and Usability Scale. Each scale answers a question:

- Is the information complete or are there topics not covered?

- Is the information right?

- Is the information presented in a way that is understandable and accessible?

The Toolbox is available at: www.trustortrash.org. The Access to Credible Genetics Resources Network developed this tool.

The nation's first Newborn Screening Clearinghouse (NBSC), connecting millions of parents and healthcare providers with resources and information relevant to more than four million newborns screened annually, will be created through a $3.75 million cooperative agreement from the U.S. Health and Human Services, Health Resources and Services Administration (HRSA), Genetic Services Branch. The project will span five years.

Genetic Alliance and the National Newborn Screening and Genetics Resources Center (NNSGRC) at the University of Texas Health Science Center at San Antonio will develop the NBSC with the Genetics and Newborn Screening Regional Collaborative Groups, March of Dimes, the Association of Public Health Laboratories, and many other partners.

There was certainly no shortage of work this summer! Genetic Alliance spent the past months collaborating with visionary stakeholders and energetic partners in Congress, the Administration, and various government agencies to convene space and shape the health reform process.

On June 17, organizations in the health community came together in Washington, DC, for an urgent meeting on healthcare reform. The meeting was convened in an open partnership among BIO, the Coalition for Affordable Health Coverage, the Coalition for 21st Century Medicine, FasterCures, Genetic Alliance, Inspire, and Research!America. Individuals participated by attending the meeting in-person and by sharing ideas and suggestions through a blog and Twitter. In the weeks that followed, Genetic Alliance convened a working group to produce overarching consensus principles. More than 150 organizations, coalitions, and companies signed on in support of the principles, which we distributed and communicated to Hill offices during Genetics Day on July 16.

On June 24, Kristi Zonno, Genetic Alliance's Director of Genetics and Health Policy, provided testimony to the FDA Transparency Task Force during its public meeting in Washington, DC. In the testimony, Kristi proposed that the FDA create a mandatory public registry for all genetic and laboratory tests to enable transparency and promote informed decision-making for consumers and providers. The testimony is the basis for Genetic Alliance's most recent contribution to its official journal, Genetic Testing and Molecular Biomarkers, where we explore transparency in genetic testing as a model for truth and openness in health systems.

Understanding Genetics: A New York - Mid-Atlantic Guide for Patients and Health Professionals is a straightforward, intuitive guide that covers basic genetics concepts, complemented with in-depth information about diagnoses of genetic conditions, newborn screening, family history gathering, genetic counseling, and genetic testing types and applications. Information focuses on patient care, patient and provider education, and genetic services in the New York - Mid-Atlantic area. The 100-page manual, published in print and electronic formats, brings baseline genetics information that can be accessed by providers at all levels, working with patients from any community.

Genetic Alliance encourages wide distribution of this resource. To discuss reproduction of this Guide with custom information from another community or agency, please contact us.

We're hiring! Genetic Alliance is currently hiring for several exciting positions. Apply now to join our team, and see who already has:

Gene Early, PhD, is a new member of the Genetic Alliance Council (formerly the Board of Directors). As a consultant to the Council for more than six years, Gene has been a driving force for the revolutionary growth of the organization. As a Council member, he will continue to catalyze transformational change for the Council and staff personally, as well as organizationally, in order to model ways of attaining entirely new levels of performance. Gene is an internationally recognized innovator in leadership development and organizational transformation. He is a co-founder of Genomic Health, founder and senior consultant of Early Leadership Consultants, LLC, as well as a partner in Leaders' Quest. For more than 30 years, he has worked with executive management teams to develop culture as a strategic driver of organizational success.

After spending time as an intern and fellow, Alyson Krokosky, MS, joined Genetic Alliance as Genetic Information Coordinator in June 2009. She collaborates with many organizations in the Genetic Alliance network to maintain and expand Disease InfoSearch as well as other educational tools and materials. She also provides support to the Access to Credible Genetics Resources Network and Genetic Alliance's two newborn screening grants. Originally from Wisconsin, Alyson graduated with a BS in Biology from Furman University in 2007. In 2009, she earned a MS in Human Genetics from the University of Michigan. During her graduate training, she conducted research to understand the quality of life of adolescents and young adults with vision loss.

Since migrating east from the Lone Star State, Kristin Queen Shaffer, Managing Director, has worked on a variety of issues including campaign finance reform, training and volunteerism for people with disabilities, women's rights, and hunger relief. As Grants Manager at Planned Parenthood Federation of America, she was the lead writer for more than 10 multi-year grants ranging from $125,000 to $20 million, establishing reporting and evaluation systems for the public policy division's grants program. Most recently she served as Field Manager for Share Our Strength's Taste of the Nation program, working with volunteer committees across the country to raise more than $1 million towards ending childhood hunger in local communities. In addition to grants and events management, she brings with her volunteer and program management experience. Earlier this year, Kristin became a mom for the first time, so in addition to her new role at Genetic Alliance, she is working to balance home, career, and kid.

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Thank you to our summer 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.

Monica Arun, Nadine Channaoui, Daria Grayer, Claire Laudone, Jacquelyn Malasky, Margaret Pilczak, Amy Plaut, Gayle Rudofsky, and Lovely Umayam.

Genetic Alliance holds webinars in three series:

Strategies for Success
Hot Topics in Genetics and Advocacy
Meet Your Neighbors

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