As this newsletter reaches you, Genetic Alliance is ending a period of strategic visioning. We will articulate our mission and goals to all of you, our community, in the coming months.

As we finish planning this year's conference, I would like to thank all who submitted abstracts - they were exceptional, making our choices difficult. The program is the best we've had, and we are thrilled! Events kick off Thursday, July 10, with Genetics Day on the Hill, a time to educate policymakers about critical issues in genetics. That evening, head to the movie theater for a sneak preview of In the Family, a rare chance to see the film before it airs on PBS in October. Friday we launch into our full day programs in research, organizational development, leadership, and policy. Saturday offers dozens of workshops on a multitude of relevant and compelling topics, and Sunday wraps up the conference with four provocative panels. View the program here.

In addition to the conference agenda, we are excited to announce the Founder's Service Award, given this year for the first time to Jannine Cody. She recently resigned from Genetic Alliance's Board of Directors after 16 years of extraordinary service, including three years as President of the Board.

We also hope you join us in congratulating Donna Foster, Director of Administration and Finance, on her retirement as she steps down after 15 years with GA. We welcome Kelly Moore to the position of Chief Financial Officer and are excited by the passion, enthusiasm, and skills she brings to our mission. Stay tuned as we introduce more new staff in the coming months.

Hope to see you all at the conference this summer!

Best,

Sharon F. Terry
President & CEO

Apply for Community Centered Family Health History (CCFHH) Program Awards to integrate use of the customizable online Does it Run in the Family? toolkit into your existing programs or initiatives.

CCFHH created a family history tool with the goal of making it accessible and sustainable in diverse communities. In Summer 2008, an online version will be available to streamline the customization process, allowing users to choose photos, personal health stories, quotations, and disease-specific information from an online file library.

Applicants are eligible for up to $10,000 as a base award. Proposals are accepted through May 9, and programs will be funded from June 1, 2008 to May 31, 2009.

Genetics Day on the Hill
Genetic Alliance will host the Third Annual Genetics Day on the Hill on Thursday, July 10. This year’s event will feature a morning policy briefing and include nearly one hundred visits to Capitol Hill offices. Washington policymakers have the ability to make decisions that impact laws throughout the nation, and we will exercise our ability to influence those outcomes! Register for this free event.

In the Family Sneak Preview

Be moved by the powerful story of Joanna Rudnick, a 31 year-old filmmaker faced with an impossible decision: remove her breasts and ovaries or risk incredible odds of developing cancer. Join us July 10 after Genetics Day on the Hill for back-to-back sneak previews of the film, which airs on PBS in the fall. Learn more about this free event.

Transformational Leadership

Genetic Alliance is excited to host our 2008 Annual Conference July 11-13 in metro Washington, DC, in celebration of transformation: personal, organizational, communal, and global. The conference kicks off Friday with concurrent daylong symposia on Leadership, Organizations, Policy, and Research. Saturday and Sunday will feature workshop and panel discussions centered on critical topics in genetics and advocacy. Register now!

Genetic Nondiscrimination
The Genetic Information Nondiscrimination Act (GINA) again passed the House of Representatives on March 5 as part of the Paul Wellstone Mental Health and Addiction Equity Act by a vote of 268-148. GINA had passed the House by a vote of 420-3 as a stand-alone bill on April 25, 2007. This recent passage provides another way for GINA to successfully navigate the Senate, where it has been stalled by a hold from Senator Tom Coburn (R-OK).

Senator Harry Reid (D-NV) controls the schedule of the Senate floor and can move GINA there for a vote. Genetic Alliance has led the Coalition for Genetic Fairness in efforts to convince Senator Reid to take action, and our entire community can help move this bill by simply making a phone call. Together, we will make a difference for GINA and the millions of Americans counting on the protections offered by this bill!

Public Policy Symposium

As part of the 2008 Annual Conference, Genetic Alliance is hosting an all-day public policy symposium on Friday, July 11. The event features four expert panels that will present and discuss genetic discrimination, health information technology, genetic testing oversight, and open access. Learn more about this event.

Genetic Alliance is delighted to announce that Genetic Testing, published by Mary Ann Liebert, Inc. Publishers, is now our official journal. It is the definitive resource for those who develop, perform, and interpret genetic tests and their results. As we work to transform health through genetics, this novel partnership with the journal will help us to drive the integration of genetics into healthcare.

Kelly Moore, our first Chief Financial Officer, has worked primarily in the financial and healthcare industries, supporting both commercial and non-profit organizations, during her twenty-year career. She founded her own management consulting firm and served as Director of Finance for the Alzheimer’s Family Day Center. While a Director at Visa USA, Kelly played a lead role in designing and implementing technology advances. Kelly is a member of the Women in Technology, where she both volunteers and mentors. Kelly graduated summa cum laude from Marymount University in Arlington, Virginia with a concentration in Finance and Organizational Behavior. She lives in VA with her husband and son.

Rhianna Campbell brings a background in banking, accounting, and mortgages to her role as Bookkeeper. In addition to her work at GA, she is a financial advisor for American International Group (AIG). Her passion to increase financial education and literacy led her to found Proper Planning Incorporated to help rebuild the lives of families affected by the recent mortgage crisis by offering financial and credit counseling and housing services to program members. Rhianna graduated from Howard University with a major in economics and a biology minor.

Sean Bowie, Administrative Assistant, has a background in education and communications and is the proprietor of Seanmichael Photography. Sean’s work experience includes research for the National Center for Housing and the Environment (NCHE) and teaching with the Audubon Society and Wilderness Therapy at a boarding school in Maine. He has a Bachelor’s Degree in English and Writing from Georgetown University and lives in Baltimore, MD with his wife and two dogs.

Hilary Andreff, Fellow, is a Colorado native currently in her senior year at Mount Holyoke College. She would like to get certified in Molecular Pathology and then return to school to study Genetic Counseling. Her current work for Genetic Alliance involves managing WikiGenetics and WikiAdvocacy and coordinating organization recruitment efforts.

Elizabeth Neely, Communications Intern, is a sophomore at George Washington University studying communication and public health. Elizabeth works on Genetic Alliance publications, including the weekly bulletin and this newsletter, and collaborates on other communication projects. She hopes to pursue a career in health promotion and advocacy. She is from Charlotte, NC.

Sumera Shaikh, Newborn Screening Intern, graduated from Franklin and Marshall College last year with a double major in biochemistry and government. She is helping to compile research for literature reviews for the Consumer Focused Newborn Screening projects. She is also working on a project to determine what advocacy methods have translated most effectively into newborn screening policy. Sumera is from Mechanicsburg, PA and starts medical school in August.

Zhihong Shen, Genetic Resources Intern, is a second-year MBA student at George Washington University. Zhihong got her B.S. in biotechnology in China and worked as a consultant for biopharmaceutical companies before entering GW's MBA program. She leads a Chinese Genetic Resources project that includes policy research, strategy analysis, and resource publication.

Carrie Skura, Public Policy Intern, is a graduate student at American University studying public policy and concentrating in social policy. Her internship focuses on public policy research and the promotion of legislation against genetic discrimination. Carrie works on the weekly policy bulletins and provides support to the Coalition for Genetic Fairness. She is from Chicago, IL.

Nick Sukachevin, Public Policy Intern, is a graduate student in the Master of Public Administration program at George Washington University. His internship focuses on conducting policy research and publishing weekly policy bulletins, which are distributed to the Genetic Alliance network.

President's Council on Science and Technology
January 8, Sharon Terry presented a consumer's perspective on personalized medicine to the PCAST as part of a number of workshops PCAST is having on the subject.

Population Based Carrier Screening for Single Gene Disorders: Lessons Learned and New Opportunities
February 7, Sharon Terry presented Balancing the Screening Issues of Individuals, Communities, and Society at the meeting sponsored by NHGRI, NICHD, HRSA, ACMG, and Genetic Alliance. Natasha Bonhomme also participated.

AdvaMed Annual Meeting
Sharon Terry presented a talk entitled Molecular Diagnostics and the Changing Landscape: From Development Through Reimbursement Considerations and Implications to device makers, policymakers, and biotechnology representatives February 8, at AdvaMed's annual meeting in Washington, DC.

Salon on Innovation in Advocacy and Consumerism
February 19, Genetic Alliance convened its first in a series of Salons. These are open space gatherings to enable disruptive visioning. Founders and senior leadership from Google, Health 2.0, Keas, 23andMe, Genomic Health, DNA Direct, and Manhattan Health Solutions gathered to consider consumer perspectives on genomics.

Genetics in Electronic Health Systems Meeting
February 20-21, James O'Leary participated in this meeting held by ACMG. Standards for integration of genetics into electronic health records were discussed, and Genetic Alliance encouraged the group to find new ways to improve usability and allow patients better access to their health information.

JP Morgan IVDMIA webinar
February 28, Sharon Terry presented on consumer issues for IVDMIA oversight to a group of about 100 investors convened by JP Morgan.

Society for Inherited Metabolic Disorders Annual Meeting
Natasha Bonhomme attended the SIMD Annual Meeting in Pacific Grove, CA March 2-5. For the first time, the Society invited advocacy organizations to attend this meeting. Society members and advocates focused on how best to build a partnership around common goals.

American College of Medical Genetics Annual Meeting
Amelia Chappelle, Tanya Murza, and James O'Leary attended the ACMG Annual Meeting March 12-16 in Phoenix, AZ. James presented a poster on Community Centered Family Health History, and Amelia presented on Project DOCC. Eleven advocates participated in the Advocates Partnership Program.

Health IT Briefing
In a briefing for members of the House and Senate and their staff on March 14, former Congresswoman Nancy Johnson and Sharon Terry spoke about the need for interoperable HIT for the nation, both to enhance care and accelerate research. The briefing was sponsored by Health IT Now!, a coalition of which Genetic Alliance is a founding member.

Rotary Club
Mary Peckiconis received a Paul Harris Fellowship on March 25th. She is also a Rotary International Scholar and participates as an alumna in various Rotary activities, including the annual conference.

Roundtable on Translating Genomic-Based Research for Health
April 1-2, the Institute of Medicine convened the third meeting of the Roundtable. Genetic Alliance is a sponsor, and Sharon Terry participates in Roundtable deliberations.

25th Anniversary of GenBank
April 7-8, NCBI celebrated the 25th anniversary of GenBank, the NIH genetic sequence database, an annotated collection of all publicly available DNA sequences. Sharon Terry spoke about the Genetic Alliance BioBank.

Wednesday, April 23, 12 PM EST
Public access: the time is now!
Hot Topics in Genetics & Advocacy

A new law says, "The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, that the NIH shall implement the public access policy in a manner consistent with copyright law."

Panelists will discuss the policy from a number of stakeholder points of view.

Sharon F. Terry - President & CEO, Genetic Alliance
Betsy L. Humphreys - Deputy Director, U.S. National Library of Medicine
Prudence S. Adler - Associate Executive Director, Association of Research Libraries

Sign up for this session.

Wednesday, April 30, 12 PM EST
What's the buzz about false positive?
Hot Topics in Genetics & Advocacy

As states continue to expand the number of conditions in their newborn screening panels, questions arise: What is a false positive result, how does it occur, and what is follow up? Join us to discuss false positives, from terminology to incidence.

Brad Therrell - Director, National Newborn Screening and Genetics Resource Center

Carol Greene - Professor of Pediatrics, Director, Pediatric Genetics Clinic, University of Maryland School of Medicine

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