Welcome from the President

Genetic Alliance council and staff are just beginning to relax from the high energy of our annual meeting. We are basking in the great success of the conference, working hard on follow-up, and finally getting into the swing of summer. In August, we alternated “writing Fridays” (time to work on papers that you just can’t get to otherwise) and “August Fridays” (Friday off after working 40 hours Monday-Thursday).

The summer has been busy with many opportunities for engagement in the federal policy arena: we testified about public access to federally-funded research, oversight of laboratory-developed tests, sensitive information in medical records, and orphan product development before the House Oversight Committee, FDA, and the National Committee on Vital and Health Statistics.

Genetic Alliance enters its 25th year this fall, so we are reflective about what 25 years of innovation have sown and what we now reap. We head into fall excited about all our projects and working with all of you, ever-focused on responding to the needs of the broad network we have convened.

Keep letting us know what is most important to you!

Sincerely,

Sharon

This year, the Newborn Screening Clearinghouse (NBSC) launched a beta website that integrates a range of social media tools to ignite conversation about newborn screening. Genetic Alliance collaborated with the project’s Steering Committee, National Advisory Committee, and the HRSA Genetics Collaboratives to incorporate a blog, Twitter (follow us @BabysFirstTest), a polling feature, and an RSS news feed. The Steering Committee is formalizing working groups to advance the utility of the website for various stakeholders.

The NBSC will also provide a forum for identifying and addressing data and information needs in the newborn screening system. For more information on the NBSC, please contact Natasha Bonhomme at nbonhomme@geneticalliance.org.

Save the dates for the 2011 Genetic Alliance Annual Conference!

June 23-25, 2011

Coming soon: abstract submissions and award nominations.

Thank you to all those who made our 2010 Annual Conference a success! If you missed it or need a recap, look no further.

• Check out our photo gallery from the weekend.
• Read a conference recap through the eyes of a “newbie”.
• Download conference presentations from the Resource Repository by searching “Advancing Novel Partnerships” or “conference 2010”.
• View final conference evaluations.

Who was at the conference? Here’s the participant breakdown:

What did everyone think of the conference? The session topics were important and timely issues relevant to the genetics and health community:

Public access was one of three issues discussed with policymakers at Genetics Day on the Hill. Public access means that published results of research funded by the U.S. government can be accessed and used by taxpayers via the Internet without journal subscription fees. Last summer, Senator Joseph Lieberman (CT) introduced the Federal Research Public Access Act (S. 1373) in the Senate, a bill that would ensure free, online access to the published results of research funded by eleven U.S. federal agencies no later than six months after publication in a peer-reviewed journal. In April, Congressman Mike Doyle (PA-14) introduced companion legislation in the House of Representatives. Access the Genetics Day on the Hill public access talking points.

On July 29, Sharon testified before the House Committee on Oversight and Government Reform on the urgency of public access policies. Read Sharon’s testimony.

Genetic Alliance BioBank Ambassadors: an inaugural registry and biobank mentoring program

BioBank Ambassadors is a mentoring program to connect organizations that have established registries or biobanks with new organizations that may be interested in creating these resources. This is an opportunity to strengthen the community and provide resources for advocates exploring registries and biorepositories. It will be a great forum to share best practices, with in-person and virtual activities throughout the year. Please contact lhorn@geneticalliance.org if you are interested in participating in BioBank Ambassadors.

Registry and Biorepository Bulletin
Genetic Alliance BioBank sends a monthly update to keep you informed of developments in the field of registries and biorepositories. This newsletter highlights relevant funding announcements, training opportunities, scientific meetings, and recent updates from the literature. To subscribe to the Registry and Biorepository Bulletin, email lhorn@geneticalliance.org.

Social media has changed the way Genetic Alliance communicates. We continue to integrate emerging social media technologies into our work to effectively reach the health and genetics community, through Facebook and other networks. Our most recent YouTube videos have received over 1,600 views, the staff collectively has more than 2,000 direct connections on LinkedIn (the Genetic Alliance LinkedIn group has 250 members), and we now have over 1,700 Twitter followers @GeneticAlliance.

Meet the Genetic Alliance staff! We’re one big, happy family.

Molly Brenner, Network Coordinator, joined the staff in January to serve as Executive Assistant and recently transitioned to her new role. Previously, she worked on the Hill for then-Representative Mark Udall and followed him to the Senate in 2008, where she served as Deputy Scheduler and handled legislative women's issues. Molly just started at The George Washington University School of Public Health to obtain her MPH, with an emphasis on health policy. Hailing from Colorado, Molly is an avid skier and loves the outdoors.

Dena Freeman, MPH, Maternal and Child Health Program Assistant, joined Genetic Alliance in January. She works on the Access to Credible Genetics Resources Network, Newborn Screening Clearinghouse, and Congenital Conditions Programs. Dena worked as a research fellow at the National Institutes of Health from 2004-2006. In 2008, she earned her master’s in Public Health Genetics at the University of Washington. For her practicum project, Dena researched informed consent and newborn screening for the Washington State Department of Health Newborn Screening Program.

Tetyana Murza, MES, Programs and Events Manager, had a baby girl, Zoryana Lyuba Mariotte, in April. Tanya will return from maternity leave in September, and we cannot wait to have her back!

Thank you to our spring and summer interns – we had a full house this year! All our interns helped shape our programs and resources.

Summer interns with Francis Collins. Top row (L to R): Cari Young, Anne Kirwan, Pamela Sun, Jessica Krueger, Ley Lacbawan, Jessica Ritsick, Courtney Rubin. Bottom row (L to R): Michael Grippaldi, Nora Isack, Samantha Zenlea, Kate Halbruner, Rebecca Cook. Not pictured: Sarah Barber, Brittany Taylor Spring interns: Shalanda Adams, Jennie Barnes, Brian Burke, Hao Cheng, Mandy Field, Neely Gal-Edd, Marcus Glassman, and Mary-Beth Harty

Natasha Bonhomme, Vice President of Strategic Development, went to Doha, Qatar in April for the Third Newborn Screening in the Middle East and North Africa Meeting. She presented on the importance of families and the public in the establishment of new NBS programs.

Genetic Alliance, HRSA, and APHL co-hosted a session entitled “Newborn Screening Systems: Innovation and Collaboration” following the APHL NBS and Genetic Testing Symposium on May 6th. Over 130 attendees discussed the purpose of the NBSC and its benefit to NBS programs, the capabilities of the NNSIS, NBS quality indicators as specified by the NBS Saves Lives Act of 2008, and technical solutions to challenges.

The same day, James O’Leary, Chief Innovation Officer, presented a talk on Consumer-Driven Research at the 2010 BIO International Convention in Chicago.

At the Conference of Montreal on June 10th, Sharon asked and gave her answers to the following questions: How can innovation help us reduce costs and improve life quality? How does genomics contribute to advances in personalized medicine progress? What stage is the pharmaceutical industry at regarding the development of medication individually adjusted to each patient’s profile?

Genetic Alliance hosted our third open house on June 22. We welcomed partners and friends into our recently expanded and renovated offices.

Genetic Alliance staff attend each HRSA Genetics Collaborative annual meeting. Jim Bialick, Assistant Director of Technology Innovation, attended the Mountain States Genetics Regional Collaborative Center meeting; Vaughn Edelson, Programs Manager, attended the Consumer Alliance portion of the Southeast Regional Collaborative meeting; and Natasha participated in the New York – Mid-Atlantic Consortium for Genetics and Newborn Screening Services emergency preparedness working group.

July was a busy month for Sharon: Among other engagements, she participated in an Institute of Medicine Roundtable on Translating Genomics-Based Research for Health, spoke at the Gates Foundation, and attended a meeting of the Health Information Standards Technology Committee.