MDA Advocacy News...
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2008
9-27-08:Updated MD-CARE Act Receives Final Congressional Approval
9-24-08: Jerry Lewis Thanks MD Community as Legislation Passes House
9-23-08: Senate Passes ALS Registry Act
9-23-08: VA Confirms ALS Disability Benefits for Vets
8-1-08: VA Expands Full Care Benefits to All Vets with ALS
7-22-08: Medicare Bill Exempts Complex Power Wheelchairs
7-10-08: Good News from Capitol Hill for People with Progressive Muscle Diseases Who Use Medicare
5-22-08: New Law Supported by MDA Prohibits Genetic Discrimination
4-24-08: Groups Release Family Version of SMA Care Standard
1-9-08: Youthful MDA Goodwill Ambassador Assumes New 2008 Spokesperson Role
1-7-08: California Girl Named 2008 MDA National Goodwill Ambassador
2007
12-11-07: Singer Accepts Sixth Term as MDA National Youth Chairman
10-4-07: Jerry Lewis Urges Congress To Protect Medicare Benefits Of People With Neuromuscular Diseases
9-3-07: Wisconsin Man Receives Robert Ross MDA National Achievement Award
7-16-07: House Joins Senate in Proposing Gold Medal for Jerry Lewis
6-29-07: MDA Celebrates 15th Year of Art Collection
6-13-07: Jerry Lewis Nominated For Congressional Gold Medal
5-1-07: MDA Activities Spotlight National ALS Awareness Month
2006
12-9-06: MDA Disability Advisory Body Celebrates 15th Anniversary
11-22-06: Country Singer Renews Commitment To MDA Youth Programs
11-22-06: South Carolina Teen Continues In National Role For MDA
11-3-06: Part Of New Medicare Policy Fixed
11-1-06: Jerry Lewis, MDA Request Postponement of New Medicare Policy For Power Wheelchairs
9-25-06: Jerry Lewis Nominated For Congressional Gold Medal
9-4-06: MDA Telethon Raises Record $61 Million
8-23-06: Michigan Man Receives MDA National Achievement Award
5-10-06 MDA Highlights ALS During May
2005
12-8-05: Due West Youth Chosen MDA 2006 National Goodwill Ambassador
12-2-05: Fitness Pioneer, Wife to Co-Chair MDA's ALS Division
11-23-05: Teen Singing Sensation Artist Billy Gilman to Lead MDA Youth Programs for Another Year
9-16-05: Katrina Sends People Served By MDA Scrambling For Help
9-5-05: MDA Telethon Raises $54.9 Million, Assists in Hurricane Relief
8-31-05: Jerry Lewis MDA Telethon to Appeal for Hurricane Relief Association to Make Separate $1 Million Donation
5-19-05: Sister Act Fights for Disability Awareness
1-13-05: Iowa Man Joins MDA National Advisory Group
1-13-05: Tampa Man Joins MDA National Advisory Group
2004
12-23-04: Teen Singing Sensation Billy Gilman To Lead MDA Youth Programs For Another Year
12-17-04: Houston Couple To Co-Chair MDA’s ALS Division For Second Year
9-28-04: MDA States Position on Medicare Drug Guidelines
9:06-04: MDA Telethon Just Misses Record Despite Hurricane Woes
8-20-04: Congress Passes Resolution Honoring Mattie Stepanek
6-08-04: Three States to Offer More Freedom to Homebound Medicare Beneficiaries
5-01-04: MDA Events Highlight ALS
2003
12-5-03: Georgia Man Recognized For Changing Medicare Rules
11-17-03: Senate Gets Ready to Vote on IDEA Changes; Parent Advocates Concerned About Attorney Fees Limits
10-29-03: Federal Agency To Honor MDA National Goodwill Ambassador
9-1-03: Telethon Hits New High: $60.5 Million
7-21-03: World Congress on Disabilities
5-21-03: NIH, MDA Partner To Fund New MD Research Centers Resulting From MD-CARE Act
4-15-03: Teen Singing Sensation Billy Gilman to Lead MDA Youth Programs
2-12-03: MDA’s Hesterlee Named To Federal MD Committee
2002
9-30-02: MD-CARE Act Leads To Establishment Of Muscular Dystrophy Research Centers
8-31-02: Dayton Teacher Receives MDA National Achievement Award
8-01-02: Medicare Attempting to Prevent Wrongful Termination of Home Health Care Benefits
7-03-02: New Language for Medicare Homebound Restriction a 'Huge Disappointment' to Reform Activists
5-28-02: MDA Will Help Buy Communication Aids
3-13-02: Research!America to Honor Jerry Lewis With Media Advocacy Award for MDA Work
2-8-02: MDA Task Force Member Helps Pass Accessible Home Ordinance
2001
12-18-01: President Signs MD-CARE Act Mandating More NIH Emphasis on MD Research
11-16-01: MD-CARE Act Passed By Full Senate
11-15-01: Airline Accessibility Guidelines Updated Following Sept. 11 Hijackings
11-07-01: Promising Outlook For Passage Of MD-CARE Act
9-24-01: House Passes MD-CARE Act
9-14-01: Jerry Lewis Supports Fire Fighters
9-3-01: Jerry Lewis Telethon Sets $56.8 Million Record
8-16-01: Led By Don Francisco, MDA National Hispanic Outreach Takes Off
7-13-01: MDA Seeks Support For Landmark Bills In The Senate And House
6-27-01: Ed McMahon Asks Congressional Committee to Speed Muscular Dystrophy Research
6-22-01: Ed McMahon to Testify for Federal Funding of MD Research
4-21-01: MDA Supports New Medicare Homebound Law
2-27-01: Jerry Lewis Urges $100 Million Increase In Government Funding To Fight Muscular Dystrophy
2-15-01: Jerry Lewis To Testify Before U.S. Senate
2-09-01: SSDI Recipients With ALS No Longer Have Wait for Medicare
EDUCATION: IEPs
“IEP Resources for Assistive Technologies and Learning Disorders” (Quest Extra March-April 2008)
“Building the IEP Puzzle”
“Eyes Wide Open: Finding the Right School for You”
“How to get Your Child's School to Provide Assistive Technology or Help with Learning Disabilities”
“Keep New IDEA in Mind When Planning IEP” (March-April 2006)
“Beating the Bully Problem” (March-April 2005)
“Law Requires Mediation in Special Ed Disputes (Quest Extra March-April 2005)
“A New IDEA” (Quest Extra March-April 2005)
FINDING FUNDS
“Medicaid Planning: Look Before You Leap” (ALSN November-December 2007)
“Infoquest – Health Care, Insurance & Government Programs” (Quest Nov.-Dec. 2007)
“It's All in the Plan” (ALSN October 2007)
“AT Funding Challenge” (Quest January-February 2007)
“Accessing & Acquiring Assistive Technology” (ALSN November-December 2006)
“Fear, Dread and Loathing: Special Needs Trusts” (Quest November-December 2006)
LIVING with a DISABILITY
“Moving Out: Operation Get a Life “(Quest May-June 08)
“Moving Out: Parents Seek New Options for Their Children” (Quest May-June 2008)
“Veterans with ALS” (ALSN March 2008)
“Fair Housing: Modifications Can Make Apartment Life Convenient and Accessible” (Quest July-Aug. 2007)
“Infoquest: Accessible Housing” (Quest July-Aug. 2007)
“Where are all the PCAs?” (Quest March-April 2007)
“Community Living Supports Given Federal Boost” (Quest Extra Nov-Dec. 2006)
“The Working Caregiver Dilemma” (ALSN Nov-Dec. 2006)
“Multiple Minorities” (Quest July-August 06)
“Dealing with Disability Day by Day” (Quest March-April 2005)
“Rosa Helps Build ‘Shared Meaning' Between Two Worlds” (Quest Nov.-Dec. 2004)
“Connections: Denise Weisenborn Fights for Employment” (Quest Sept.-Oct. 2004)
AMERICANS WITH DISABILITIES ACT
“Balancing the Scales: The ADA Slowly Gains Weight” (Quest July-August 2007)
“As the Wheel Turns: ADA Requires Equal Access to Health Care” (Quest Nov-Dec. 2006)
“Toughing It Out: The ADA at 16” (Quest July-Aug. 2006)
“Righting the ADA” (Quest July-Aug. 2005)
“Can’t Get In? Work it Out” (ADA Mediation program) (ALSN April 2005)
“Making the ADA Work for You” (Quest June 2002)
LEGISLATION
“Three Years Later: A ‘Homebound Amendment’ Remains in Limbo” (ALSN April 2008)
“The SCHIP Football” (Quest March-April 2008)
“Infoquest: Cutting Red Tape for Disability Applicants” (Quest Jan.-Feb. 2008)
“SMA: Committee Presents Clinical Care Guidelines” (Quest Extra Nov-Dec. 2007)
“MDA Task Force Sends Letters about Medicare DME Restrictions” (Quest Sept-Oct. 2007)
“An Endless Fight for Essential Benefits” (ALSN Oct-Nov 2005)
“Reversing Medicare’s ‘In the Home’ Policy” (Quest Extra July-Aug. 2005)
“MDA Voices Concern: Will New Drug Guidelines Benefit Medicare Recipients with NMD?” (Quest Nov-Dec. 2004)
“From Where I Sit — Dubious Victory over Medicaid” (Quest Mar.-Apr. 2004)
“Learning to Squawk” – (advocacy advice) (Quest July-August 2003)
“Alabama Student Wins Medicaid Waiver; Fight Goes on for Those Not Covered”