mr SPENCER PERLMAN

Implemented an "Advocacy Day" for the Rare Bone Disease Advocacy Alliance, consisting of the OI Foundation and other rare bone disease patient organizations. Advocates from around the country urged lawmakers in the House and the Senate to support increased funding for rare bone disease research at the National Institutes of Health. Contacted staff of Rep. Ruppersberger to urge the introduction of a resolution recognizing Osteogenesis Imperfecta Foundation Awareness Week.

Requested the attendance of Sen. Gillibrand and Rep. Lowey at a groundbreaking ceremony for the HVHC Teaching Kitchen

Requested the support of Rep. LoBiondo for a letter to CMS regarding the Face-to-Face Encounter Requirement for home health physicians.

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.

Healthcare

Organized and implemented a Capitol Hill advocacy day on behalf of the OI Foundation and six other rare bone disease advocacy groups. Participants met with approximately 35 congressional offices to urge greater federal funding at the NIH for research into rare bone diseases.

Briefed staff for Sen. Kirsten Gillibrand about the Hudson Valley Center for Culinary Wellness and a Teaching Kitchen aimed at improving the eating habits and overall wellness of patients and the surrounding community.

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.

Requested that Rep. Frank LoBiondo sign on to a letter to CMS urging the Face-to-Face requirement in the home health PPS be revised

Contacted office of Rep. Lowey regarding the Congresswoman's visit to the hospital.

Discussed SMA carrier screening and the role played by the federal government - urged CDC to support a stakeholder conference to align divergent SMA carrier screening guidelines.

Requested report language in the FY 2014 Labor-HHS-Education Appropriations bill urging the NIH to support a stakeholder meeting regarding SMA carrie screening protocols.

Contacted office of Rep. Ruppersberger to secure a room for an upcoming advocacy day. Contacted House Members regarding Osteogenesis Imperfecta Awareness Week

Discussed H.R. 1281, The Newborn Screening Saves Lives Reauthorization Act of 2013, with staff for Rep. Roybal-Allard and Rep. Simpson

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

Briefed staff of the late Sen. Frank Lautenberg about the ongoing activities of AtlantiCare.

Sought signatures of NJ Delegation on letter to CMS supporting the continuation of national budget neutrality on the imputed rural floor for hospital IPPS.

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)

Responded to inquiries from Rep. Pallone's office regarding the use of observation status in the treatment of patients.

Contacted Rep. Lance's office with regard to concerns about the National Flood Insurance Program

Discussed with the NJ Delegation the impact on community hospitals of continued cuts to Medicare reimbursement and service delivery reforms.

Conducted a meeting with staff for Rep. Frank Pallone regarding meningitis outbreak in U.S. Conducted meetings with staff for Sen. Menendez and Lautenberg regarding funding for UMDNJ's Regional Biocontainment Laboratory. Conducted meetings with the New Jersey Congressional Delegation regarding funding for poison control centers. Secured letters of support for the Cancer Institute of New Jersey from Sen. Menendez and Rep. Pallone. Scheduled and particpate in tour of NJ Dental School with Rep. Payne.

Submitted draft report language to Members of the U.S. House and Senate in support of natural history studies conducted by the NIH within the FY 14 LHHS Appropriations bill.

Submitted requested report language for the FY 2014 Labor-HHS-Education Appropriations bill re SMA carrier screening.

Worked with Sen. Mendnez staff to secure a congratulatory note and flag for School of Nursing Event

Requested support from the NJ Delegation in an effort to reinstate Demo #1 of the CMS Bundled Payment Demonstration Project

Discussed the National Pediatric Research Network Act with staff for Sen. Mark Kirk

Requested that the NJ Congressional Delegation support emergency funding for damage caused by Superstorm Sandy

Urged Sen. Lautenberg, Sen. Menendez, and Rep. LoBiondo to reject and Medicare cuts to hospitals as part of the American Taxpayer Relief Act of 2012.

Contacted office of Rep. Frank Pallone, Jr. to discuss legislative changes to Medicare geographic reclassification criteria

Organized and participated in an advocacy day involving dozens of Members of the House and Senate meeting with people impacted by Osteogenesis Imperfecta.

Contacted Rep. Frank Pallone, Jr.'s office regarding New Jersey's "Medicaid Global Waiver" application.

Discussesd the prospects of the National Pediatric Research Network Act (H.R. 6163/S. 3461)

Solicited assistance from Rep. Ruppersberger for a Capitol Hill Advocacy Day.

Requested a meeting with Rep. Holt to discuss hospital campus.

Solicited support from Sen. Menendez and Sen. Lautenberg for language in the FY 2013 Labor, Health and Human Services Appropriations bill related to Regional Biocontainment Laboratories

Informed the MN congressional delegation of the 2012 Annual SMA Conference.

Requested report language in the FY 2013 Labor-HHS-Education Appropriations bill.

Developed and submitted to Senator Robert Menendez and Senator Frank Lautenberg legislative report language supporting federal funding for the national system of Regional Biocontainment Laboratories.

Met with House Members to request legislative report language in the FY 2013 Labor, Health and Humans Services Appropriations bill supporting increased federal funding of Osteogenesis Imperfecta.

Contacted office of Rep. Bill Pascrell, Jr. to discuss Traumatic Brain Injury Advocacy Day on Capitol Hill.

Contacted House appropriations committee staff regarding report language in FY2012 Labor-HHS-Education Appropriations bill

Contacted House appropriations committee staff regarding report language in FY2012 Labor-HHS-Education Appropriations bill

Met with the New Jersey Congressional Delegation staff to promote AtlantiCare Special Care Center.

Contacted the Office of Safe and Drug Free Schools regarding the timing of the release of the Foundations for Learning Grant program; Contacted the Office of Safe and Drug Free Schools regarding the release of the Emergency Management for Higher Education Program Contacted the Office of Post-Secondary Education to obtain specific information on the Foreign Language and Area Studies Fellowship Program Contacted the Office of Post-Secondary Education regarding the funding levels for the TRIO / Upward Bound programs

Met with the New Jersey Congressional Delegation staff to promote the AtlantiCare Special Care Center.

Contacted State Department of Consular Affairs to request and Emergency Visa for Susana Dela Isla Felix of the Phillippines.

Assisted with the development of a letter to Senator Lautenberg urging funding for Community Transformation Grants in the FY 2012 Labor-HHS-Education Appropriations Bill

Assisted with the development of letters to the New Jersey Delegation related to funding for poison control centers.

Conducted meetings with the New Jersey Congressional Delegation to express opposition to payment cuts to inpatient rehabilitation hospitals.

Contacted staff for House and Senate members to urge that report language be included in the FY 2012 Labor-HHS-Education Appropriations bill supporting the Traumatic Brain Injury Model Systems program.

Met with staff for Representative Ruppersberger to solicit support for increased federal funding of Osteogenesis Imperfecta research.

Met with Senator Gillibrand staff to discuss programs and priorities of the hospital.

Contacted House Appropriations Committee staff regarding report language in FY 2012 Labor-HHS-Education Appropriations bill.

Coordinated a response from UMDNJ to Rep. Fran Pallones office regarding a UMDNJ contractor.

Lobbied New Jersey Congressional Delegation to support increased funding for Advanced Medical Technology in the FY12 DOD Appropriations Bill

Discussed the Hospital Inpatient PPS FY 2012 rule with the NJ Congressional Delegation, urging support for the extension of the imputed rural floor provision.

Requested report langauge in the FY 2012 Labor-HHS-Education Appropriations bill ensuring adequate funding for the TBI Model Systems Program under NIDRR.

Scheduled tour of hospital for Rep. Nan Hayworth

Seek report langauge in the FY 2012 Labor-HHS-Education Appropriations bill urging NIH to continue supporting SMA-related research activties, including newborn screening.

Seek report language in the FY 2012 Labor-HHS-Education Appropriations bill urging the NIH to continue support for SMA carrier screening activities.

Contacted HRSA with technical questions regarding the Nurse Education, Practice, Quality, and Retention Program

Requested information from CMS on the date of release of the RFP for the Independence at Home Demonstration.

Health care legislation, federal grants, appropriations.

Health care legislation, federal grants, appropriations.

Contacted CMS to recieve additional information on the Community-based Care Transitions Program

Requested report language in the FY 2012 Labor-HHS-Education Appropriations bill ensuring adequate funding for the TBI Model Systems Program under NIDRR.

Inquired of opportunities to recieve funding for intermodel parking facility

Scheduled meetings with the NJ Delegation to discuss federal funding for the AIDS Education and Training Centers.

Seek report langauge in the FY 2012 Labor-HHS-Education Appropriations bill to encourage NIH to support natural history studies of adults with OI

Seek report langauge in the FY 2012 Labor-HHS-Education Appropriations bill urging NIH to continue supporting SMA-related research activties.

Contacted NICHD to seek assistance in identifying grant opportunities to support the care of infants identified with SMA through newborn screening

Seek report language in the FY 2012 Labor-HHS-Education Appropriations bill urging the NIH to continue support for SMA carrier screening activities.

Contacted CMS to receive additional information on the Community-based Care Transitions Program

Encouraged New Jersey Congressional Delegation to support additional funding for health professionals and nursing training programs under Titles VII and VIII of the Public Health Service Act

Requested participation as an expert panelist in a public forum soliciting input into the development of federal guidelines for health risk assessments.

Contacted the Office of Safe and Drug Free Schools regarding the timing of the release of the Foundations for Learning Grant program; Contacted the Office of Safe and Drug Free Schools regarding the release of the Emergency Management for Higher Education Program Contacted the Office of Post-Secondary Education to obtain specific information on the Foreign Language and Area Studies Fellowship Program Contacted the Office of Post-Secondary Education regarding the funding levels for the TRIO / Upward Bound programs

Advocated for increased funding in the President's FY 2012 budget request for the TBI Model Systems program under NIDRR at the Department of Education

Scheduled meetings with NJ Congressional Delegation with the UMDNJ AIDS Education and Training Centers. Advocated for report language in the FY 12 Labor-HHS-Education Appropriations bill under NIAMS urging funding for natural history studies of OI

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

Contacted staff for NHGRI, NICHD, and NINDS regarding ongoing and planned follow-up activities relative to a conference on SMA carrier screening that took place in October 2009.

Contacted the Office of Safe and Drug Free Schools to inquire about the planned release of the Foundations for Learning Grant program

Provided background information on the Medicare Shared Savings Program and impending regulations promulgated by CMS Inquired about the timing of the Medicare FQHC Advanced Primary Care Practice Demonstration Initiative Inquired about the timing and content of the Community Based Care Transition Program Contacted the Office of Minority Health to discuss potential grant funding to address health disparities Contacted the Department to inquire about joining the "Partnership for Patients" program Contacted the Health Resources and Services Administration regarding the timed release of the Patient Navigator grant program

Responded to Request for Information (RFI) from the Centers for Disease Control and Prevention (CDC) regarding the development of a guidance document concerning health risk assessments (HRAs), per Section 4103 of the Affordable Care Act (P.L. 111-148, P.L. 111-152).

Coordinated for Senator Robert Menendez and Congressman Bill Pascrell to attend a solar panel even on William Paterson's campus on October 21, 2010

Contacted Rep. Andrews office regarding an issue involving a Stratford Fire Truck.

Secured support from the Congressional Brain Injury Task Force to formally request that OMB and the National Institute on Disability and Rehabilitation Reasearch (NIDRR) extend and expand the Traumatic Brain Injury Model Systems program.

Requested information from NIAMS regarding the activities of the NIAMS Advisory Committee.

Sought passage of the SMA Treatment Acceleration Act of 2009 (H.R. 2149 / S. 1158).

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).

Engaged the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and the Secreatary's Advisory Committee on Genetics, Health, and Society (SACGHS) to establish a Carrier Screening Task Force

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 continue working with stakeholders to establish guidelines for population-based carrier screening for Spinal Muscular Atrophy (SMA).

Contacted staff at the Office of Minority Health to inquire about federal funding opportunities for programs dealing with asthma and obesity

Contacted the CDC's Office of Prevention through Healthcare (OPTH) to request information on a RFI and a public forum regarding the implementation of Section 4103 of PPACA (P.L. 111-148) that relates to the use of health risk assessment (HRA) tools in a new annual wellness physical examination for Medicare Part B beneficiaries.

Seek report language in the FY 2011 Labor -HHS0Education Appropriations bill urging the NIH to support clinical development of therapeutics for Spinal Muscular Atrophy

Seek support for and passage of the SMA treatment Acceleration Act of 2009 (H.R. 2149 / S. 1158)

Opposed H.R. 5663, the Miner Safety and Health Act of 2010 due to concerns that it is overly punitive to small businesses and does little to improve workplace safety and the wellbeing of employees

Urged policymakers to carve out an exeption from Red Flags identification theft requirements for small health care providers. Urged passage of H.R. 3763 to exclude small health care providers from Red Flags requirements.

Seek funding for oral health care and dental training programs in the fiscal year 2011 Labor, Health and Human Services, and Education Appropriations bill

Educate policymakers and congressional staff about osteogenesis imperfecta.

Seek support for and passage of the SMA Treatment Acceleration Act of 2009 (H.R. 2149 / S. 1158).

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

Collaborate with the Advisory Committee on Heritable Disorders in Newborns and Children and the Secretary's Advisory Committee on Genetics, Health, and Society to develop a joint Workgroup to study federal policies on carrier screening.

Seek report language in the FY 2011 Labor-HHS-Education Appropriations bill urging the NIH to work with stakeholders on developing uniform guidelines for providers and patients on carrier screening for Spinal Muscular Atrophy

Coordinated day long seeson of meetings with the NJ Congressional Delegation regarding University priorities.

Sought federal appropriations funding for health and higher education related projects throughout the University.

Briefed Members of Congress about UMDNJ's federal legislative priorities regarding Medicare and Medicaid reimbursement.

sought assistance from House Members for Traumatic Brain Injury Consortium Research Project.

Seek funding in the FY 2010 Labor, Health & Human Services, and Education Appropriations bill for mammography equipment.

Sought funding to be included for William Paterson University in the FY 2010 Commerce-Justice-Science Appropriations bill for a campus security project.

Provided information on competitive grants through the Department of Education

Coordinated invitations for Department of Energy staff to a 10.21.2010 event at William Paterson University

Provided congressional staff with information regarding environmental health for a congressional hearing.

Sought congressional support for a letter to Sec. Sebelius to improve the regulations on Medicaid EHR incentives to Academic Dental Institutions.

Sought federal appropriations funding for health and higher education related projects throughout the University.

Sought funding to be included for William Paterson University in the FY 2010 Commerce-Justice-Science Appropriations bill for a campus security project.

monitored US department of education for information relating to federal funding opportunities

Educate policymakers and congressional staff about osteogenesis imperfecta.

Seek funding for clinical trial network through the FY 2011 Labor-HHS-Education Appropriations bill

Outreach to policymakers and Department of Defense to identify partners for conducting research into improving rehabilitation for traumatic brain injury in warfighters.

Medicare reimbursement issues.

Seek funding for emergency department expansion in the FY 2011 Labor-HHS-Education Appropriations bill

monitored US department of education for information relating to federal funding opportunities

Sought funding to be included for William Paterson University in the FY 2010 Commerce-Justice-Science Appropriations bill for a campus security project.

Advocated for increased attention to dental and oral health issues in the Patient Protection and Affordable Care Act (P.L. 111-48, 111-52).

Urged greater funding in the FY 2011 Labor-HHS-Education Appropriations bill for oral health infrastructure and dental trainingn programs.

Urged policymakers to carve out an exeption from Red Flags identification theft requirements for small health care providers. Urged passage of H.R. 3763 to exclude small health care providers from Red Flags requirements.

Collaborate with the Advisory Committee on Heritable Disorders in Newborns and Children and the Secretary's Advisory Committee on Genetics, Health, and Society to develop a joint Workgroup to study federal policies on carrier screening.

Seek report language in the FY 2011 Labor-HHS-Education Appropriations bill urging the NIH to work with stakeholders on developing uniform guidelines for providers and patients on carrier screening for Spinal Muscular Atrophy

Organized meetings with the New Jersey Congressional Delegation for faculty to discuss the importance of federal funding for training educators.

Sought funding to be included for William Paterson University in the FY 2011 Commerce-Justice-Science Appropriations bill for a campus security project.

Cootdinate invitations to the NJ Congressional Delegation to attend NJ gubenatorial debate hosted at University.

Urged the NJ Congressional Delegation for funding to be included in the FY 2011 Department of Defense - research & development; Department of Energy (Biological Environemental Research), and the Labor/HHS/Education Appropriations bill, Health Resources & Services Administration Appropriations Bills.

Assisted with the drafting and submission of comments for NJ Dental Schools submission to the HIT Policy Committee.

Sought federal appropriations funding for health and higher education related projects throughout the University.

Briefed Members of Congress about UMDNJ's federal legislative priorities regarding Medicare and Medicaid reimbursement.

Sought assistance from House Members for Traumatic Brain Injury Consortium Research Project.

Seek funding in the FY 2011 Labor, Health & Human Services, and Education Appropriations bill for mammography equipment.

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.

Advocate for the inclusion of spinal muscular atrophy in the federal uniform newborn screening panel.

Seek grant funding for pilot study of newborn screening technologies.