H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014
Duration: May 1, 2007
to
September 30, 2014
General Issues: Health Issues , Budget/Appropriations , Medical/Disease Research/Clinical Labs
Spending: about $261,508 (But it's complicated. Here's why.)
It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.
Agencies lobbied since 2007: House of Representatives, U.S. Senate, Natl Institutes of Health (NIH), Health & Human Services - Dept of (HHS)
Lobbyists
Lobbyists named here were listed on a filing related to this lobbying engagement. They may not be working on it now. Occasionally, a single lobbyist whose name is spelled two different ways on filings may be represented twice here.
Lobbyist
Covered positions?
Spencer Perlman Legislative Director, U.S. House
Intern/DirConstRel/LA/LD Rep. John Porter
LD, LA, Dir. of Constituent Relations, US House
LD, LA, Dir. of Constutuent Relations, US House
LA, LD, House
Lauren Watts n/a
Disclosures Filed
Once a lobbying engagement begins, the lobbyist or firm is required to file updates four times a year. Those updates sometimes change which lobbyists are involved or add new issues being discussed. When lobbyists stop working for a client, the firm is also supposed to file a report disclosing the end of the relationship.
3rd Quarter, 2014
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 20, 2014.
Original Filing: 300682752.xml
Lobbying Issues
Urged support for H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014
Agencies Lobbied
U.S. House of Representatives
3rd Quarter, 2014
WASHINGTON STRATEGIC CONSULTING terminated an engagement in which they represented Families of Spinal Muscular Atrophy on Oct. 20, 2014.
Original Filing: 300682754.xml
Lobbying Issues
H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2014
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 18, 2014.
Original Filing: 300661731.xml
Lobbying Issues
Urged Rep. Eric Cantor's office to expedite passage of H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014.Made grassroots outreach to over 60 legislative offices requesting that Members send a letter to the Commissioner of the FDA urging the agency to continue collaborating. Made grassroots outreach to 25 House offices raising their awareness to the 21st Century Cures Initiative implemented by the House Energy & Commerce Committee.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Made grassroots outreach to over 60 legislative offices urging Members to support increased funding for the National Institutes of Health. Submitted report language to the House and Senate Appropriations Committees for inclusion in the FY15 Labor-HHS-Education Appropriations bill urging the NIH to continue to support SMA-related research.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2014
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $16,508. The report was filed on April 17, 2014.
Original Filing: 300639515.xml
Lobbying Issues
Worked with staff for the House Energy & Commerce on H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2013, to urge the addition of language to permit preliminary consideration of Nomination Forms for disorders without an approved treatment.
Agencies Lobbied
U.S. House of Representatives
4th Quarter, 2013
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $5,000. The report was filed on Jan. 20, 2014.
Original Filing: 300621218.xml
Lobbying Issues
Worked with staff for the Senate HELP Committee, Sen. Hagan, Sen. Hatch, Sen. Harkin, and Sen. Enzi on language in S. 1417, the Newborn Screening Saves Lives Reauthorization Act of 2013, to include language to set deadlines for the Secretary's Advisory Committee to complete reviews of Nomination Forms for addition to the Recommended Uniform Screening Panel.
Spoke with staff for the House Energy & Commerce Health Subcommittee, Rep. Roybal-Allard, Rep. Simpson, Rep. Pitts, and Rep. Pallone about H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2013, to urge the addition of language to set deadlines for the Secretary's Advisory Committee to consider Nomination Forms for the addition to the Recommended Uniform Screening Panel.
Agencies Lobbied
U.S. Senate
3rd Quarter, 2013
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $5,000. The report was filed on Oct. 21, 2013.
Original Filing: 300606025.xml
Lobbying Issues
Discussed S. 1417, The Newborn Screening Saves Lives Reauthorization Act of 2013, with staff for Sen. Hagan, Sen. Enzi, Sen. Harkin, Sen. Franken, Sen. Bennet, Sen. Hatch, and Sen. Kirk re urging support for the provision creating priority review for rare disorders.
Discussed H.R. 1281, The Newborn Screening Saves Lives Reauthorization Act of 2013, with staff for Rep. Pallone, Rep. Pitts, and Rep. Cantor re amending the legislation to include priority review for rare disorders.
Urged staff for Sen. Harkin and the Senate Appropriations Committee to increase funding for the hereditary disorders line under HRSA, particularly related to funding for the Advisory Committee on Heritable Disorders in Newborns and Children.
Agencies Lobbied
U.S. Senate
2nd Quarter, 2013
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $5,000. The report was filed on July 18, 2013.
Original Filing: 300576716.xml
Lobbying Issues
Requested that report language be included in the FY 2014 Labor-HHS-Education Appropriations bill supporting SMA research funding through the NIH. Language requests made to Sen. Harkin, Sen. Kirk, Rep. Lowey, Rep. Roybal-Allard, and Rep. Simpson
Agencies Lobbied
U.S. Senate
Lobbying Issues
Discussed H.R. 1281, The Newborn Screening Saves Lives Reauthorization Act of 2013, with staff for Rep. Roybal-Allard and Rep. Simpson
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2013
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 19, 2013.
Original Filing: 300556865.xml
Lobbying Issues
Submitted draft report language for the FY 2014 Labor-HHS-Education Appropriations bill urging the NIH to support the development of SMA care protocols and SMA therapy development
Contacted staff for Rep. Lucille Roybal-Allard re the outlook for The Newborn Screening Saves Lives Reauthorization Act of 2013 (H.R. 1281).
Inquired of the Senate HELP Committee the outlook for the National Pediatric Research Network Act (S. 424)
Agencies Lobbied
U.S. Senate
4th Quarter, 2012
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Jan. 22, 2013.
Original Filing: 300539297.xml
Lobbying Issues
Discussed the National Pediatric Research Network Act with staff for Sen. Mark Kirk
3rd Quarter, 2012
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 19, 2012.
Original Filing: 300514443.xml
Lobbying Issues
Discussesd the prospects of the National Pediatric Research Network Act (H.R. 6163/S. 3461)
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2012
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 18, 2012.
Original Filing: 300489234.xml
Lobbying Issues
Requested report language in the FY 2013 Labor-HHS-Education Appropriations bill.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Informed the MN congressional delegation of the 2012 Annual SMA Conference.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2012
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 18, 2012.
Original Filing: 300464709.xml
Lobbying Issues
Contacted House appropriations committee staff regarding report language in FY2012 Labor-HHS-Education Appropriations bill
Agencies Lobbied
U.S. House of Representatives
4th Quarter, 2011
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Jan. 20, 2012.
Original Filing: 300447864.xml
Lobbying Issues
Contacted House Appropriations Committee staff regarding report language in FY 2012 Labor-HHS-Education Appropriations bill.
Agencies Lobbied
U.S. House of Representatives
3rd Quarter, 2011
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 20, 2011.
Original Filing: 300426157.xml
Lobbying Issues
Seek report langauge in the FY 2012 Labor-HHS-Education Appropriations bill urging NIH to continue supporting SMA-related research activties, including newborn screening.
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2011
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 20, 2011.
Original Filing: 300401064.xml
Lobbying Issues
Seek report langauge in the FY 2012 Labor-HHS-Education Appropriations bill urging NIH to continue supporting SMA-related research activties.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Requested letters of suppor from the Florida Congressional Delegation for the FSMA Annual Conference.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2011
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 20, 2011.
Original Filing: 300379094.xml
Lobbying Issues
Contacted NINDS staff to inquire about the Neuro NEXT program and the plans for release of a SMA biomarker RFP
Contacted NICHD staff to inquire about potential funding opportunities to support follow-up care for babies identified with SMA in a NIH-funded newborn screening pilot study
Agencies Lobbied
Natl Institutes of Health (NIH)
4th Quarter, 2010
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Jan. 20, 2011.
Original Filing: 300352081.xml
Lobbying Issues
Secured language in the Senate Appropriations Committee Report (S.Rept. 111-243) accompanying the FY 2011 Labor, Health & Human Services, and Education Appropriations bill (S. 3686) urging the NIH to faciliate the development of clinical trials infrastructure to support efforts to find a treatment or cure for Spinal Muscular Atrophy (SMA).
Lobbying Issues
Requested information from NINDS regarding the activities of the NINDS Advisory Committee.
Agencies Lobbied
Natl Institutes of Health (NIH)
3rd Quarter, 2010
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 20, 2010.
Original Filing: 300326706.xml
Lobbying Issues
Seek report language in the FY 2011 Labor-HHS-Education Appropriations bill uring the NIH to support clinical development of therapeutics for Spinal Muscular Atrophy
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek support for and passage of the SMA Treatment Acceleration Act of 2009 (H.R. 2149 / S. 1158).
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2010
WASHINGTON STRATEGIC CONSULTING amended a lobbying report for representation of Families of Spinal Muscular Atrophy in Q22010 on Nov. 3, 2010.
Original Filing: 300331961.xml
Lobbying Issues
Seek report language in the FY 2011 Labor -HHS0Education Appropriations bill urging the NIH to support clinical development of therapeutics for Spinal Muscular Atrophy
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek funding support for pilot studies of newborn screening technologies for Spinal Muscular Atrophy
Agencies Lobbied
U.S. Senate
2nd Quarter, 2010
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 20, 2010.
Original Filing: 300297642.xml
Lobbying Issues
Seek report language in the FY 2011 Labor-HHS-Education Appropriations bill uring the NIH to support clinical development of therapeutics for Spinal Muscular Atrophy
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek funding support for pilot studies of newborn screening technologies for Spinal Muscular Atrophy.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2010
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 20, 2010.
Original Filing: 300271587.xml
Lobbying Issues
Seek report langauge in the FY 10 Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
Natl Institutes of Health (NIH)
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
Health & Human Services - Dept of (HHS)
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Seek grant funding for pilot study of newborn screening technologies.
Agencies Lobbied
Natl Institutes of Health (NIH)
4th Quarter, 2009
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Jan. 20, 2010.
Original Filing: 300242684.xml
Lobbying Issues
Seek report langauge in the FY 10 Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Seek grant funding for pilot study of newborn screening technologies.
Agencies Lobbied
Natl Institutes of Health (NIH)
3rd Quarter, 2009
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 20, 2009.
Original Filing: 300219531.xml
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Seek grant funding for pilot study of newborn screening technologies.
Agencies Lobbied
Natl Institutes of Health (NIH)
Lobbying Issues
Seek support in the FY 2010 Defense Appropriations bill for a clinical trial utilizing stem cells.
Agencies Lobbied
U.S. House of Representatives
2nd Quarter, 2009
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 20, 2009.
Original Filing: 300193060.xml
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Seek grant funding for pilot study of newborn screening technologies.
Agencies Lobbied
Natl Institutes of Health (NIH)
Lobbying Issues
Seek support in the FY 2010 Defense Appropriations bill for a clinical trail utilizing stem cells.
Agencies Lobbied
U.S. House of Representatives
1st Quarter, 2009
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 20, 2009.
Original Filing: 300163460.xml
Lobbying Issues
Seek report langauge in the FY 10 Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
Lobbying Issues
Seek grant funding for pilot study of newborn screening technologies.
Agencies Lobbied
Natl Institutes of Health (NIH)
4th Quarter, 2008
In Q4, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Jan. 19, 2009.
Original Filing: 300127167.xml
Lobbying Issues
Seek passage of the SMA Treatment Acceleration Act (H.R. 3334 / S. 2042)
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek report langauge in the FY 09 Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
3rd Quarter, 2008
In Q3, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on Oct. 20, 2008.
Original Filing: 300106519.xml
Lobbying Issues
Seek passage of the SMA Treatment Acceleration Act (H.R. 3334 / S. 2042)
Agencies Lobbied
U.S. Senate
Lobbying Issues
Seek report langauge in the FY 09 Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
2nd Quarter, 2008
In Q2, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on July 18, 2008.
Original Filing: 300073697.xml
Lobbying Issues
Worked to secure the introduction of, and increase support for, The SMA Treatment Acceleration Act (H.R. 3334 / S. 2042).
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek report langauge in the Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the ACHD GDNC uniform federal newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
1st Quarter, 2008
In Q1, WASHINGTON STRATEGIC CONSULTING lobbied for Families of Spinal Muscular Atrophy , earning $10,000. The report was filed on April 18, 2008.
Original Filing: 300045764.xml
Lobbying Issues
Worked to secure the introduction of, and increase support for, The SMA Treatment Acceleration Act (H.R. 3334 / S. 2042).
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Seek report langauge in the Labor-HHS-Education Appropriations bill urging the NIH to continue and expand their efforts relative to support for research into a treatment or cure for spinal muscular atrophy.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Advocate for the inclusion of spinal muscular atrophy in the ACHDGDNC uniform federal newborn screening panel.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Medical/Disease Research/Clinical Labs
2nd Quarter, 2007
Washington Strategic Consulting filed a lobbying registration on Aug. 12, 2007 to represent Families of Spinal Muscular Atrophy, effective May 1, 2007.
Original Filing: 200053238.xml
Issue(s) they said they’d lobby about: increase awareness of Spinal Muscular Atrophy; increase NIH appropriations for Spinal Muscular Atrophy; insitute newborn screening for spinal muscular atrophy; improve onsite care for the disabled and their family .
Source: Clerk of the U.S. House of Representatives and Secretary of the Senate
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