Susan Atkins, a WSGSC Family Advocate from Washington was invited to the White House to help celebrate the 20th anniversary of the passage of the Americans with Disabilities Act. For more information including pictures of the celebration, please click here.

Genetics in Medicine recently published an article about payment and insurance coverage of medical foods. The article reports on results from a survey of state newborn screening representatives and a review of state policies. To access the article, click here.

Upcoming Events: Genetic Alliance Webinar Series (April 30, May 12, 19 and 26 - 2010)

For additional information or to register for these upcoming events, please visit http://www.geneticalliance.org/webinars. Registration is free. If you do miss a session or a presentation, recordings will be made available online afterwards

HOT TOPICS IN GENETICS AND ADVOCACY

Friday, April 30, 2010 (12:00pm – 1:30pm EST) – The Myriad Gene Patent Case – What Does it Mean, and Why Does it Matter?

Please join the conversation regarding this high-profile lawsuit and controversial topic, moderated by Professor John Conley of the University of North Carolina School of Law. Joining him will be Hans Sauer of BIO, which opposes the plaintiffs’ position; Josh Sarnoff, who filed an amicus brief on behalf of the American Medical Association supporting the plaintiffs and Ann Waldo, Senior Counsel for Genetic Alliance.

Presenters:
John Conley - Professor of Law, University of North Carolina at Chapel Hill
Joshua Sarnoff - Professor & Associate Director, Glushko-Samuelson Intellectual Property Law Clinic, Washington College of Law, American University
Hans Sauer - Associate General Counsel for Intellectual Property, BIO
Ann Waldo - Senior Counsel, Genetic Alliance

Wednesday, May 12, 2010 (12:00pm – 1:00pm EST) – The Congenital Conditions Program: From Legislation to Implementation.

The aim of the Congenital Conditions Program is to create replicable, sustainable mechanisms for patient support and education. Since the fall of 2009, the project has undergone new developments. This webinar will discuss the legislation and the corresponding HRSA program guidance, as well as the overarching project goals of HRSA and Genetic Alliance.

Presenters:
Natasha Bonhomme - Vice President of Strategic Development, Genetic Alliance
Victoria Miller - Executive Director, Trisomy 18 Foundation
Lenee Simon - Public Health Analyst, Genetic Services Branch, MCHB, HRSA

Wednesday, May 19, 2010 (12:00pm – 1:00pm EST) – What’s New with the Newborn Screening Clearinghouse?

Genetic Alliance and partners are developing the nation’s first clearinghouse of newborn screening (NBS) information; aiming to increase the awareness of NBS and improve the understanding, and decision-making capacity of families, health professionals , industry and the public. This webinar will showcase the latest updates to the NBS http://www.geneticalliance.org/webinars C and plans for future development. Topics to be discussed include the NBSC public blog, educational features, and stakeholder feedback gathered at recent national meetings.

Presenters:
Natasha Bonhomme - Vice President of Strategic Development, Genetic Alliance
Lenee Simon - Public Health Analyst, Genetic Services Branch, MCHB, HRSA
STRATEGIES FOR SUCCESS

Wednesday, May 26, 2010 (12:00pm – 1:00pm EST) – Activism through Documentary Film

How can film transform our advocacy? In some cases, existing campaigns are captured on film, spreading a cause farther than could otherwise have been accomplished. Sometimes a film itself is the mission driver. Presenters will share their experiences working in this accessible medium and explore how art has impacted their activism.

Presenters:
Dan Habib - “Including Samuel”
Marc Smolowitz - “The Power of Two”
Anabel Stenzel - “The Power of Two”, Genetic Counselor, Stanford University Medical Center
Isabel Stenzel - “The Power of Two”

The HRTW is offering a topical call on Wednesday, April 21, 2010 at 3:00pm (EST) for all Title V CYSHCN Directors, Transition care workers, NBS Educators, F2F Centers, Family and Youth Leaders, MCHB, Medical Home, and others.

The main focus of the call will be to:

1. Describe changes in state CYSHCN systems promoting transition preparation.
2. Describe progress in promoting transition from pediatric to adult medical homes.
3. Describe youth leadership development
4. Discuss promoting involvement in personal decision making in preparation for transitioning to adult health.
5. Discuss HRTW programming with families to help them plan for transition with their teens.
6. Discuss examples of inter-agency collaboration to promote transition to adult health care with funding, work, and community involvement.

To join the HRTW call:

Dial-in Number: 1-800-567-5900 Access Code: 870036#

The call is FREE, but pre-registration is strongly recommended to help us understand who is participating and plan for further calls. Pre-register for this event and see more information at http://www.hrtw.org/hrtwu/calls/04-21-10_Overview.html

Powerpoints, handouts and resources will be posted during the next few days on the materials page at http://www.hrtw.org/hrtwu/calls/04-21-10_Materials.html

Archives from the 13 previous HRTW Topical Calls are at: http://www.hrtw.org/hrtwu/topicalCalls.html

If you have any questions or comments, please contact Toni Wall (PI & Director of HRTW) at toni.g.wall@maine.gov or toniwall@hrtw.org

The 2010 American Public Health Association’s (APHA) Genomics Forum is open for submission of abstracts related to the 2010 conference theme, “Social Justice: Public Health Imperative.” The Genomics Forum will be held during APHA’s Annual Meeting on November 6-10 in Denver Colorado. Abstracts are due on February 3, 2010.

For more information, on the Genomic Forum, visit www.genomicsforum.org. For more information on submission of abstracts, visit: http://apha.confex.com/apha/138am/genf.htm.

The National Coordinating Center (NCC) has just published the December issue of their newsletter, the NCC Collaborator. It contains an article about how the WSGSC disseminates information as well as other interesting pieces written by different regional collaboratives. To view the newsletter, go to: http://www.nccrcg.org/newsletter/NCC-Collaborator-current.pdf

The National Coordinating Center for the Regional Collaboratives has released its July 2009 issue of the NCC Collaborator. This issue features partnerships with the Medical Home and primary care providers. To view the newsletter, click here

HRSA recently released an RFA as part of the implementation of the Prenatally and Postnatally Diagnosed Conditions Awareness Act (PPDCAA). This cooperative agreement is for one award of $820,000 per year for three years.

The purpose of RFA is to:

1. Increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions;
2. Strengthen existing networks of support through outreach programs;
3. Improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions;
4. Ensure that patients receive information about the accuracy of the diagnostic tests for the conditions;
5. Establish or increased access to a resource hotline.

Applicants must have capability and capacity to coordinate activities among the relevant stakeholders and initiate activities at the state, regional, and national level. I see this as essentially a national resource center.

For more information, go to: https://grants.hrsa.gov/webExternal/SFO.asp?ID=7A9325F9-7227-4BF3-9662-90B60C3150FA

The National Coordinating Center for the Regional Collaboratives has released its March 2009 issue of the NCC Collaborator. This issue features telehealth and telemedicine resources with the different Regional Collaboratives. To view the newsletter, go to: http://www.nccrcg.org/newsletter/NCC-Collaborator-current.pdf

The Hawaii Chapter of Family Voices and the Hawaii Family-to-Family Health Information Center is features in this week’s Family Voices newsletter! To read the Family Voices newsletter, go to: http://www.familyvoices.org/pub/fc/FC_2009-02-20.pdf