Muscular Dystrophy Association (MDA) - News http://www.mda.org/advocacy/ 9/27/2011 Get the latest news from the Muscular Dystrophy Association (MDA) en-us ABLE Act Would Help Families Plan for Child's Financial Future http://quest.mda.org/news/able-act-would-help-families-plan-childs-financial-future 01/17/12 If passed into law, the ABLE Act would create special savings accounts to be used for disability-related expenses without threatening other government benefits Coalition Letter of Support to Congress regarding extension of the Therapeutic Discovery Project Tax Credit http://www.mda.org/advocacy/PDFS/CoalitionLetterofSupporttoCongressregardingextensionoftheTherapeuticDiscoveryProjectTaxCredit.pdf 12/14/11 As representatives from the patient and health advocacy community, we are writing to ask you to support an extension of the Therapeutic Discovery Project Tax Credit (I.R.C. § 48D). Coalition Letter of Support to the Joint Committee on Deficit Reduction to maintain current Medicare B reimbursement http://www.mda.org/advocacy/PDFS/ASP-Sign-On-Letter-10-7-11.pdf 10/7/11 On behalf of the undersigned patient advocacy organizations, we encourage you to oppose proposals that would reduce Medicare payments for providers of drugs and biologics under Medicare Part B. MDA Transitions Summit: Breaking Down the Barriers http://quest.mda.org/news/mda-transitions-summit-breaking-down-barriers 9/27/11 Officials learn from MDA panel about improving access to higher education, employment and independent living for people with disabilities. MDA Fly Out 2011 Focuses on Transitions http://quest.mda.org/news/mda-fly-out-2011-focuses-on-transitions 7/29/11 This August, MDA reps and lawmakers will address issues facing youth with muscle disease as they grow into adulthood Coalition Letter of Support for the National Center for Advancing Translational Sciences (NCATS) http://www.mda.org/advocacy/PDFS/NCATS-Community-Sign-onLetterSenat-7-29-11.pdf 7/29/11 Third Annual Becker Muscular Dystrophy Conference http://www.mda.org/news/110620bmd-conference.html 6/20/11 Join us August 13 to hear from a panel of individuals with Becker muscular dystrophy about living with BMD, as well as the latest BMD updates from expert physicians and scientists on topics including clinical care; cardiac treatment and research; physical therapy; and research and clinical trials. MDA Presents Housing Rights Webinar May 24 http://quest.mda.org/news/mda-presents-housing-rights-webinar-may-24 5/20/11 Know Your Rights, The Fair Housing Act will feature a discussion and Q and A of the law regarding housing rights for people with disabilities. MDA Launches Transitions Resource Center for Young Adults http://quest.mda.org/news/mda-launches-transitions-resource-center-young-adults-%E2%80%98childhood-diseases%E2%80%99 5/18/11 Interactive Web pages offer resources on careers, education, independent living and more for youth and young adults with neuromuscular diseases, and their families. Cures Acceleration Network (CAN) funding letter of support http://mda.org/advocacy/PDFS/CAN_FY12_Support_Letter_House_Senate.pdf 5/9/11 Coalition Letter of Support to Senate and House Labor HHS Appropriations Committee for funding of newly enacted Cures Acceleration Network (CAN) SMA Newborn Screening Advocacy Update http://www.mda.org/news/110506sma_nih.html 5/6/11 We are pleased to announce that the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) has agreed to fund a pilot study of newborn screening (NBS) for spinal muscular atrophy (SMA). Advocacy Update for SMA Community - Priorities for 112th Congress http://www.mda.org/news/110428sma_nih.html 4/28/11 The past few years have yielded significant increases in federal awareness of and funding for SMA. Our grassroots reach – and national impact – has created critical momentum for SMA research and therapy development efforts; and we are committed to accelerating this momentum in the coming months. Coalition Letter of Support to Congress regarding H.R. 1041 (Fairness in Medicare Bidding Act) http://www.mda.org/advocacy/PDFS/AAHomecare_Consumer_Letter_Supporting_HR%201041.pdf 3/28/11 American Association for Homecare's thank you letter to representatives Glenn Thompson and Jason Altmire regarding HR 1041. Funding Extension Brings Hope for Resolution http://www.mda.org/news/110311_hr-1.html 3/11/11 While Congress and President Barack Obama approved federal government funding through March 18, funding for the remainder of Fiscal Year 2011 still must be resolved. Legislative Briefs: International Rare Disease Day and more http://quest.mda.org/news/legislative-briefs-international-rare-disease-day-and-more 2/28/11 International Rare Disease Day and a few proposed laws, policies and government activities of interest to the MDA community. Take 5! Call to Action - Federal Research Spending in Jeopardy http://www.mda.org/advocacy/PDFS/NIH-Amdt-CR.pdf 2/16/2011 The House of Representatives will vote this week on a funding bill (H.R.1) that will cut funding for the National Institutes of Health (NIH) by $1.6 billion. This is a 5.2 percent cut from last year and would reduce the NIH budget to the 2008 funding level. We urge you to let your elected member of Congress know that this issue matters to you. Despite Objections, Medicare Competitive Bidding Set to Begin http://quest.mda.org/news/despite-objections-medicare-competitive-bidding-set-begin 12/3/2010 Competitive bidding for durable medical equipment starts Jan. 1 despite criticism of the program; MDA is urging action and seeking feedback from those affected. SMA Grassroots Update http://www.mda.org/news/101026sma_nih.html 10/26/2010 Thank you for all you have done to increase awareness and attention towards Spinal Muscular Atrophy (SMA). As most of you are aware, this has been an eventful year in the U.S. Congress; national health care and research priorities have been prominent on the radar screens of lawmakers. Fly Out 2010 Takes Off http://quest.mda.org/news/fly-out-2010-takes 10/4/2010 MDA families, clinicians and advocates met with lawmakers and staff in 27 states; more meetings planned throughout the year. Nationwide Children's Hospital Named MD Research Center http://quest.mda.org/news/nationwide-childrens-hospital-named-md-research-center 8/27/2010 A $7 million federal grant will allow researchers to focus on solving immune-system obstacles to MD gene therapy. Feds Both Seek and Give Advice Re Disability Issues http://quest.mda.org/news/feds-both-seek-and-give-advice-re-disability-issues 8/9/2010 The government is seeking advice about improving federal hiring regulations for people with disabilities, while a free government publication offers advice about making health care facilities accessible. The ADA Turns 20 http://quest.mda.org/news/ada-turns-20 7/26/2010 In recognition of this landmark civil rights legislation, MDA has pulled together a variety of articles by and for people with neuromuscular diseases. A 'Living Breathing Document': Thoughts on the ADA http://quest.mda.org/news/living-breathing-document-thoughts-ada 7/26/2010 Members of the MDA community share their thoughts about the Americans with Disabilities Act and its impact on their lives. FDA/NIH Meeting Announcement http://www.mda.org/news/100604fda-nih-mtg.html 6/4/2010 We are pleased to announce the upcoming FDA and NIH co-sponsored meeting titled Antisense Oligonucleotide (AON) Therapies in Neuromuscular Diseases, taking place on the 27th and 28th September, 2010 in Washington DC, USA. SMA Treatment Acceleration Act Update http://www.mda.org/news/100420sma_treatment.html 4/20/2010 Thank you for all you have done to increase awareness and attention towards efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all those who have taken the time to contact their Members of Congress in support of The SMA Treatment Acceleration Act (H.R. 2149/S. 1158). Health Care Changes Coming http://quest.mda.org/news/health-care-changes-coming 3/23/2010 The new health care reform law has many provisions of particular interest to people with neuromuscular diseases. Congenital Muscular Dystrophy Now Included in Compassionate Allowances Conditions http://www.mda.org/advocacy/eupdate/advocacy_eupdate_100211.htm 2/11/2010 The National Task Force for the Early Identification of Childhood Neuromuscular Disorders is conducting a survey. We want to learn more about parents' first concerns about their child and how they described those concerns to their healthcare providers. Support the Community Choice Act of 2009 http://www.mda.org/news/091026community-choice-act.html 11/06/2009 Earlier this year, the Community Choice Act of 2009 was introduced in the Senate and House of Representatives (S. 683/H.R.1670). The bill amends the Social Security Act to require state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals. FAQs about the SMA Community's Progress with the SMA Treatment Acceleration Act http://www.mda.org/news/091030sma_treatment_act.html 11/02/2009 As we continue to promote the SMA Treatment Acceleration Act (H.R. 2149/S. 1158) in the current Congress, many important questions have been posed regarding the status of the bill, the political climate in Washington, and the need for sustained grassroots engagement. MDA Scientists Win Federal Stimulus Grants for Neuromuscular Disease Research http://www.mda.org/research/091012NIH-ARRA.html 10/12/2009 At least 15 Muscular Dystrophy Association research grantees, past and present, have won funding from the National Institutes of Health through the American Recovery and Revitalization Act (ARRA) to accelerate the search for treatments and cures for neuromuscular diseases. FAQs Prepare Public for National ALS Registry http://www.mda.org/publications/Quest/extra/Oct09/ALSRegistryFAQ.html 10/08/2009 The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. VA Benefits - ALS Deadline 9-23-09 http://www.mda.org/news/090918va_benefits.html 09/18/2009 Last September the Secretary of Veterans Affairs designated amyotrophic lateral sclerosis (ALS) a service-connected disability for all Veterans with 90 days or more of continuous active service in the military. 2010 National Disability Summit Seeks Applicants to Help Shape National Policy http://www.mda.org/publications/Quest/extra/sept09/policy.html 09/17/2009 People with disabilities have an opportunity in 2010 to help develop recommendations that will shape national disability policy and programs for the next decade. MDA's 'Fly Out' Scores Points with Legislators http://www.mda.org/publications/Quest/extra/aug09/fly-with-me.html 08/26/2009 MDA's new "Fly Out" program brings together the MDA community and legislators home on recess. UPDATE: Air Travelers 'Hostile' as Vent Labels Issue Drags On http://www.mda.org/publications/Quest/extra/jul09/air-update.html 07/31/2009 Air travelers "hostile" as new required labels for respiratory equipment fail to materialize. SMA Treatment Acceleration Act - Grassroots Update http://www.mda.org/news/090724sma-act-grassroots-update.html 7/24/2009 Medicare Wheelchair Benefit Partially Restored http://www.mda.org/publications/Quest/extra/jul09/restored.html 7/17/2009 Critical Medicare Benefit in Jeopardy http://www.mda.org/news/090629medicare-benefit-jeopardy.html 6/29/2009 UPDATE - SMA Treatment Acceleration Act of 2009 http://www.mda.org/news/090626sma_treatment_act_grassroots.html 6/26/2009 Oxon Hill Man Selected for MDA National Advisory Group http://www.mda.org/news/090618taylor.html 6/19/2009 Making the Most of Recess: MDA Fly Out 2009 http://www.mda.org/news/090618mda-fly-out.html 6/19/2009 Alert: New Air Regs Air travelers using respiratory equipment must follow new labeling regulations -- or risk losing their seats http://www.mda.org/publications/Quest/extra/jun09/air_travel.html 6/4/2009 SMA Treatment Acceleration Act of 2009 http://www.mda.org/news/090522sma_senate_joint_annoucement.html 5/26/2009 SMA Bill Introduced in Senate http://www.mda.org/news/090522sma-act.html 5/26/2009 Please Urge Your Elected Officials to Support These Bills That Impact Our Community! http://www.mda.org/news/090514more_mda_supported_acts.html 5/14/2009 Unified SMA Community Introduces SMA Treatment Acceleration Act http://www.mda.org/news/090429sma_acceleration_act.html 4/29/2009 SMA Treatment Acceleration Act: Update for the SMA Community http://www.mda.org/news/090203sma_letter.html 2/3/2009 Updated MD-CARE Act Receives Final Congressional Approval http://www.mda.org/news/080926md_care_act_reauthorization.html 9/27/2008 Jerry Lewis Thanks MD Community as Legislation Passes House http://www.mda.org/news/080922md-care-act-reauthorization.html 9/24/2008 Senate Passes ALS Registry Act http://www.als-mda.org/research/news/080923als_registry.html 9/23/2008 VA Confirms ALS Disability Benefits for Vets http://www.als-mda.org/research/news/080923als_disibility_benefits.html 9/23/2008 VA Expands Full Care Benefits to All Vets with ALS http://www.als-mda.org/news/080716als_va_benefits.htm 8/1/2008 Medicare Bill Exempts Complex Power Wheelchairs http://www.mda.org/news/080722medicare-power-wheelchairs.html 7/22/2008 Good News from Capitol Hill for People with Progressive Muscle Diseases Who Use Medicare http://www.mda.org/news/080710medicare-competitive-bidding.html 7/10/2008 New Law Supported by MDA Prohibits Genetic Discrimination http://www.mda.org/news/080522gina.html 5/22/2008 Groups Release Family Version of SMA Care Standard http://www.mda.org/research/080424sma_care_standard.html 4/24/2008 Youthful MDA Goodwill Ambassador Assumes New 20 Spokesperson Role http://www.mda.org/news/0801092008_spokesperson.html 1/9/2008 California Girl Named 20 MDA National Goodwill Ambassador http://www.mda.org/news/0801042008_MDA_natl_goodwill_ambassador.html 1/7/2008 Singer Accepts Sixth Term as MDA National Youth Chairman http://www.mda.org/news/071211gilman-2008.html 12/11/2007 Jerry Lewis Urges Congress To Protect Medicare Benefits Of People With Neuromuscular Diseases http://www.mda.org/news/071004medicare.html 10/4/2007 Wisconsin Man Receives Robert Ross MDA National Achievement Award http://www.mda.org/news/070902paa.html 9/3/2007 House Joins Senate in Proposing Gold Medal for Jerry Lewis http://www.mda.org/news/070716lewis_congressional_goldmedal.html 7/16/2007 MDA Celebrates 15th Year of Art Collection http://www.mda.org/news/070629artcollection.html 6/29/2007 Jerry Lewis Nominated For Congressional Gold Medal http://www.mda.org/news/070613congressional_gold_medal.html 6/13/2007 MDA Activities Spotlight National ALS Awareness Month http://www.als-mda.org/research/news/070501als_month.html 5/1/2007 MDA Disability Advisory Body Celebrates 15th Anniversary http://www.mda.org/news/061219national_taskforce.html 12/9/2006 Country Singer Renews Commitment To MDA Youth Programs http://www.mda.org/news/061122billy_gilman.html 11/22/2006 South Carolina Teen Continues In National Role For MDA http://www.mda.org/news/061122luke_christie.html 11/22/2006 Part Of New Medicare Policy Fixed http://www.mda.org/news/061103medicare_change.html 11/3/2006 Jerry Lewis, MDA Request Postponement of New Medicare Policy For Power Wheelchairs http://www.mda.org/news/061101lewis_medicare.html 11/1/2006 Jerry Lewis Nominated For Congressional Gold Medal http://www.mda.org/news/060925congressional_gold_medal.html 9/25/2006 MDA Telethon Raises Record $61 Million http://www.mda.org/news/060904telethon_2006.html 9/4/2006 Michigan Man Receives MDA National Achievement Award http://www.mda.org/news/061018paa_2007.html 8/23/2006 MDA Highlights ALS During May http://www.mda.org/news/060501als_month.html 5/10/2006 Due West Youth Chosen MDA 2006 National Goodwill Ambassador http://www.mda.org/news/051208luke_christie_gwa.html 12/8/2005 Fitness Pioneer, Wife to Co-Chair MDA's ALS Division http://www.mda.org/news/051202nietos_serve.html 12/2/2005 Teen Singing Sensation Artist Billy Gilman to Lead MDA Youth Programs for Another Year http://www.mda.org/news/051123billy_gilman_serves_again.html 11/23/2005 Katrina Sends People Served By MDA Scrambling For Help http://www.mda.org/news/050916after_katrina.html 9/16/2005 MDA Telethon Raises $54.9 Million, Assists in Hurricane Relief http://www.mda.org/news/050905telethon_tote_2005.html 9/5/2005 Jerry Lewis MDA Telethon to Appeal for Hurricane Relief Association to Make Separate $1 Million Donation http://www.mda.org/news/050831hurricane_katrina.html 8/31/2005 Sister Act Fights for Disability Awareness http://www.mda.org/news/050519janeal.html 5/19/2005 Iowa Man Joins MDA National Advisory Group http://www.mda.org/news/050113roozeboom.html 1/13/2005 Tampa Man Joins MDA National Advisory Group http://www.mda.org/news/050113navarro.html 1/13/2005 Teen Singing Sensation Billy Gilman To Lead MDA Youth Programs For Another Year http://www.mda.org/news/041223gilman.html 12/23/2004 Houston Couple To Co-Chair MDA’s ALS Division For Second Year http://www.mda.org/news/041217rice.html 12/17/2004 MDA States Position on Medicare Drug Guidelines http://www.mda.org/news/040928uspstatement.html 9/28/2004 MDA Telethon Just Misses Record Despite Hurricane Woes http://www.mda.org/news/040906telethon.html 9/6/2004 Congress Passes Resolution Honoring Mattie Stepanek http://www.mda.org/news/040820mattiecongress.html 8/20/2004 Three States to Offer More Freedom to Homebound Medicare Beneficiaries http://www.mda.org/news/040608homebound.html 6/8/2004 MDA Events Highlight ALS http://www.mda.org/news/040501alsevents.html 5/1/2004 Georgia Man Recognized For Changing Medicare Rules http://www.mda.org/news/031205georgiaman.html 12/5/2003 Senate Gets Ready to Vote on IDEA Changes; Parent Advocates Concerned About Attorney Fees Limits http://www.mda.org/news/031111idea.html 11/17/2003 Federal Agency To Honor MDA National Goodwill Ambassador http://www.mda.org/news/031029stepanek.html 10/29/2003 Telethon Hits New High: $60.5 Million http://www.mda.org/news/030901telethon.html 9/1/2003 World Congress on Disabilities http://www.mda.org/news/030721worldcongress.html 7/21/2003 NIH, MDA Partner To Fund New MD Research Centers Resulting From MD-CARE Act http://www.mda.org/news/030521partner.html 5/21/2003 Teen Singing Sensation Billy Gilman to Lead MDA Youth Programs http://www.mda.org/news/030415bgilman.html 4/15/2003 MDA’s Hesterlee Named To Federal MD Committee http://www.mda.org/news/030212hesterlee.html 2/12/2003 MD-CARE Act Leads To Establishment Of Muscular Dystrophy Research Centers 9/30/2002 http://www.mda.org/news/021002MDACareAct.html Dayton Teacher Receives MDA National Achievement Award 8/31/2002 http://www.mda.org/news/021001dunaway-haney.html Medicare Attempting to Prevent Wrongful Termination of Home Health Care Benefits 8/1/2002 http://www.mda.org/news/020801medicare.html New Language for Medicare Homebound Restriction a 'Huge Disappointment' to Reform Activists 7/3/2002 http://www.mda.org/news/020703feature_homebound.html MDA Will Help Buy Communication Aids 5/28/2002 http://www.mda.org/news/020528communication.html Research!America to Honor Jerry Lewis With Media Advocacy Award for MDA Work 3/13/2002 http://www.mda.org/news/020314JerryLewis.html MDA Task Force Member Helps Pass Accessible Home Ordinance 2/8/2002 http://www.mda.org/news/020208taskmember.html President Signs MD-CARE Act Mandating More NIH Emphasis on MD Research 12/18/2001 http://www.mda.org/news/011218MDCAREact.html MD-CARE Act Passed By Full Senate 11/16/2001 http://www.mda.org/news/011116actpassed.html Airline Accessibility Guidelines Updated Following Sept. 11 Hijackings 11/15/2001 http://www.mda.org/news/011115AirlineAccess.html Promising Outlook For Passage Of MD-CARE Act 11/7/2001 http://www.mda.org/news/011107mdacareact.html House Passes MD-CARE Act 9/24/2001 http://www.mda.org/news/010924house_hr717.html Jerry Lewis Supports Fire Fighters 9/14/2001 http://www.mda.org/news/010914firefighters_support.html Jerry Lewis Telethon Sets $56.8 Million Record 9/3/2001 http://www.mda.org/news/010903telethon.html Led By Don Francisco, MDA National Hispanic Outreach Takes Off 8/16/2001 http://www.mda.org/news/010830donfrancisco.html MDA Seeks Support For Landmark Bills In The Senate And House 7/13/2001 http://www.mda.org/news/010713s805_hr717.html Ed McMahon Asks Congressional Committee to Speed Muscular Dystrophy Research 6/27/2001 http://www.mda.org/news/010628mcmahon_congress.html Ed McMahon to Testify for Federal Funding of MD Research 6/22/2001 http://www.mda.org/news/010622mcmahon_testify.html MDA Supports New Medicare Homebound Law 4/21/2001 http://www.mda.org/news/010427homebound.html Jerry Lewis Urges $100 Million Increase In Government Funding To Fight Muscular Dystrophy 2/27/2001 http://www.mda.org/news/010227mdalewis.html Jerry Lewis To Testify Before U.S. Senate 2/15/2001 http://www.mda.org/news/010216lewissenate.html SSDI Recipients With ALS No Longer Have Wait for Medicare 2/9/2001 http://www.mda.org/news/010209alsnewsmedicare.html