----- Original Message -----
From: "Tom Sathre" <tsathre@...>
To: "Gian Piero Sommaruga (casa)" <gippi@...>
Sent: Wednesday, July 30, 2008 10:08 PM
Subject: US Genetic Info Non-descrimination Act

Gian,
 
Here is an article about discrimination that we ataxians find relevant. I recomend posting this article for FABabelFamily. This article is from NIH.
 
Tom.
 

 

 

URL of this page: http://www.genome.gov/24519851

 

Genetic Information Nondiscrimination Act: 2007-2008

President Bush Signs Genetic Information Nondiscrimination Act of 2008 New

President George W. Bush signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008, Wednesday, May 21, 2008, in the Oval Office. White House photo by Eric Draper.Washington, Wed., May 21 2008 — The President has signed into law the Genetic Information Nondiscrimination Act (GINA) that will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination.

Read more: President Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008 [whitehouse.gov]

The history of GINA's passage through the legislative process, 2007-2008, can be tracked on this page.



2007

Legislative Chronology

House Resolution (H.R.) 493: The Genetic Information Nondiscrimination Act of 2007 [thomas.loc.gov]

All Actions (All links are on Thomas.loc.gov, the legislative information resource from the Library of Congress):

  •  
    • January 16, 2007: Introductory remarks on measure: Hon. Louise M. Slaughter
    • January 16, 2007: Referred to the Committee on Education and Labor, and in addition to the Committees on Energy and Commerce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
    • January 16, 2007: Referred to House Education and Labor
      • February 14, 2007: Committee Consideration and Mark-up Session Held
      • February 14, 2007: Ordered to be Reported (Amended) by Voice Vote
    • January 16, 2007: Referred to House Energy and Commerce
    • January 16, 2007: Referred to House Ways and Means
    • January 18, 2007: Referred to the Subcommittee on Health
    • March 5, 2007 at 3:47p.m.: Reported (Amended) by the Committee on Education and Labor. H. Rept. 110-28, Part I
    • March 5, 2007 at 3:48 p.m.: House Committee on Energy and Commerce Granted an extension for further consideration ending not later than March 23, 2007
    • March 5, 2007 at 3:49 p.m.: House Committee on Ways and Means Granted an extension for further consideration ending not later than March 23, 2007.
    • March 21, 2007: House committee/subcommittee actions: Ordered to be Reported (Amended) by Voice Vote
    • March 26, 2007: Reported (Amended) by the Committee on Ways and Means. H. Rept. 110-28, Part II.
    • March 29, 2007: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-28, Part III.
    • March 29, 2007: Placed on the Union Calendar, Calendar No. 46.
      The Union Calendar is the list of bills available for consideration to the Committee of the Whole. Bills are referred to the Union Calendar if they directly or indirectly deal with money.
    • April 25, 2007: House passes act.
2008
  •  
    • May 1, 2008:Introduced in House
    • May 1, 2008:Passed/agreed to in House: On motion to suspend the rules and agree to the resolution Agreed to by voice vote.
    • May 1, 2008:Passed/agreed to in Senate: Received in the Senate, considered, and agreed to without amendment by Unanimous Consent.
    • May 21, 2008: President Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008

Senate Bill (S.) 358: The Genetic Information Nondiscrimination Act of 2007 [thomas.loc.gov]

All Actions (All links are on Thomas.loc.gov, the legislative information resource from the Library of Congress):

  •  
    • January 22, 2007: Introductory remarks on measure : Sen. Olympia J. Snowe
    • January 22, 2007: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
    • January 31, 2007: Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.
    • March 29, 2007: Committee on Health, Education, Labor, and Pensions. Reported by Senator Kennedy with an amendment in the nature of a substitute. Without written report.
    • March 29, 2007: Placed on Senate Legislative Calendar under General Orders. Calendar No. 97.
    • April 10, 2007: By Senator Kennedy from Committee on Health, Education, Labor, and Pensions filed written report. Report No. 110-48
2008
  •  
    • April 24, 2008: Passed/agreed to in Senate: Passed Senate with an amendment by Yea-Nay Vote. 95 - 0. Record Vote Number: 113.
    • May 5, 2008: Resolving differences — House actions: On motion that the House agree to the Senate amendment Agreed to by the Yeas and Nays: 414 - 1 (Roll no. 234).
    • May 5, 2008: Cleared for White House.
    • May 21, 2008: President Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008

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Last Updated: May 21, 2008

 

 

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

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