Newsletters and eBulletins

Newsletters (pdf)

Spring 2010

• MDS Patient Survey
  A View into Patient Knowledge,Attitudes and Expectations: Overview
  Diagnosis and Treatment
  Awareness of Disease Fundamentals, Individual Status and Prognosis Needs Improvement
  How Are Expectations Defined and Discussed?
  The Information Exchange – A Two-Way Street
  What Patients Can Learn and Do Next

• Join Us in Chicago and New York City
• Advances in the Understanding and Treatment of Aplastic Anemia: Share with your doctor
• The Importance of Advocacy for Bone Marrow Failure Disease
• Welcome to our 2009 Annual Report & Honor Roll of Donors!  Annual Report
• Our Researchers Report Significant Progress in Their AA&MDSIF-Funded Studies!
• AA&MDSIF 2010 Scientific Symposium
• The AA&MDSIF Peer Support Network – How This Important Resource Can Work for You

Fall 2009

NOTE: links below are to web-exclusive content


• Future Directions in BMFD Research
• 20 Years: Catalyst for Scientific Careers Saving Lives
• Research Spotlight: Dr. Leslie Biesecker
• NIH Insights into Bone Marrow Failure Disease Research
• Department of Defense Research Program
• Advocacy: Federal Legislation
• Researchers Report
• Awareness and Patient Education
  

Spring 2009

NOTE: links below are to web-exclusive content

• Act Now to Support Current Legislation to Secure Federal Dollars for Services & Research
• Researchers Report
• Research in Progress
• 2009 Patient Education Programs
• A New Era of Service
• Don't Let Chronic Illness Cause You to Doubt Yourself
• Facts for Life
• Dedicate A Day on Our Calendar of Hope
• Artist Roberto Parada
• AA&MDSIF Activists
• 2008 Honor Roll
  • Lifetime Tributes
  • Lifetime Giving

Winter 2008

• Bone Marrow Failure Disease Capitol Hill Day
• Living With the Psychological Distress of
• Invisible Chronic Illness
• Sign Up for eBulletins
• FY2006 AA&MDSIF Use of Funds
• Good News about Research Funding from DoD
• More Research Funding for Bone Marrow Failure
• AA&MDSIF to Serve on Panel Examining Bone Marrow Transplants for MDS
• Bone Marrow Failure Disease Consortium Is Still Recruiting Patients
• My Story : An AA&MDSIF 25th Anniversary Project
• 2007 Honor Roll of Donors

Fall 2007

• Growth Factors and Medicare
• Clinical Trials Around the Country
• Bone Marrow Failure Disease Consortium Clinical Trials
• AA&MDSIF Announces New Executive Director
• From the Executive Director
• AA&MDSIF Awards Three New Research Grants for Current Cycle
• In Praise of Our Medical Advisory Board Chairs
• 2007 AA&MDSIF Holiday Cards
• People Are Doing Great Things!
• Revised Warnings and Adverse Reactions for Exjade® 
• Ways to Support the AA&MDSIF at Work
• Marrowforums Anniversary

Winter 2007

• Marilyn Baker Retires After 17 years
• Nutritional Concerns
• Advocacy: Achievements in an Uncertain Era
• Memorable Year for Hikers Robin & Patty
• Fun & Easy Ways to Support AA&MDSIF
• Report on the 2006 ASH Conference
• Iron Overload Support Network
• Thanks to Our 2006 Donors
• NFL Hall of Fame Star, Harry Carson, Starts Scholarship Fund

Fall 2006

• OUR HIKE Progress Report
• Meet the Officers of the AA&MDSIF
• Loving Tributes Fund
• What Your Donation to Research is Doing!
• Victory! 48 States Down, 2 to Go!
• Recently Published Medical Articles
• NYC Walk-a-Thon Raises $38,000 for PNH Research
• Immunizations and Flu Shots

Summer 2006

• New Medicine Approved for all Subtypes of MDS--Dacogen Approved in the US
• Legacy of Hope, Robert F. Carroll, Ph.D.
• Recently Published Articles
• Attention Medical Researchers
• Combined Federal Campaign
• Nationwide Study of MDS




Spring 2006

• First Mother-Daughter Team in History
• to Hike Across America!
• Alexion Releases Phase III Results for Eculizumab
• Victory! Semper Fi
• My Bike, My Poetry, My Life, My MDS
• Medical Q & A
• Conference Registration Form




Winter 2006

• Revlimid Approved by the FDA
• Robin Grapa hikes across America
• Husbands, Wives, and Illness
• BMT Clinical Trials Network
• Patients Need to Keep Moving
• Special Thanks to Our 2005 Donors!
• Advocacy Updates

Fall 2005

• Oral Iron Chelator Exjade Approved
• Drug Updates
• Working for the Cause
• International Bone Marrow Symposium
• Grassroots Lobbying for BMF Resolution




Summer 2005

• Congressional Resolution (H.Con.Res. 179)
• Funding Hope
• Moving to Help Others
• Holiday Card Order Form pdf




Spring 2005

• ASH Meeting
• For Kids
• Protections for Clinical Trials Participants
• PNH-Research Award Matching Challenge




Winter 2005

• Announcing Two New Tools for Patients
• Helpful Resources
• Thank You to Our 2004 Donors!
• Annual Patient & Family Conference




Fall 2004

• Conference Webinar and Drug Information Page
• Needed: Volunteers Who Have Taken Vidaza
• Online Video Presentation on Vidaza
• Phase III Study of Eculizumab for PNH




Summer 2004

• FDA Approves First Drug for Treating MDS
• Talking to a Child with Bone Marrow Disease
• Toolkit for Families Living with Bone Marrow Disease
• FDA's Role in the Approval of Drug Products
• Supplemental Insurance for Medicare Patients




Spring 2004

• Funding Hope
• Windsurfing for 84-year-old Patient
• Horseback Riding for 77-year-old Patient
• Helping Fund a Cure




Winter 2004

• AA&MDSIF Plays Key Role in NIH-Funded Bone Marrow Failure Research Center
• Iron Overload Research Update
• Diet & Supplements
• AA&MDSIF Spreads The Word
• Thank You 2003 Donors!




Fall 2003

• We're Spreading the Word
• Advocate News
• Living With a Chronic Disease
• Florentine Caminisch Research Award




Spring 2003

• Families Fund Cutting Edge Research
• The Art of MDS
• 2003 AA&MDSIF Research Awards
• PNH Educational Conference
• Counterfeit Procrit Alert




Winter 2003

• AA&MDSIF Celebrating 20 Years
• Patient Travel Fund
• Talking to Kids
• Children Deserve a Medal
• Families Needed
• Twins Needed
• Gifts from Shane
• Communication Between Adult Children & Parents
• Thank You, 2002 Donors!
• Medicare Coverage

eInsiders

June 2010
May 2010
April 2010
March 2010 
February 2010

eBulletins

January 2010

December 2009
November 2009
October 2009
September 2009
August 2009
July 2009
June 2009
May 2009
April 2009
March 2009
February 2009
January 2009

December 2008
November 2008
October 2008
September 2008
August 2008
July 2008
June 2008
May 2008
March 2008
February 2008
January 2008

December 2007
November 2007
July 2007
April 2007 
January 2007

November 2006
October 2006
September 2006
August 2006
June 2006
May 2006
April 2006
March 2006
February 2006

December 2005
November 2005
October 2005
September 2005, #1
September 2005, #2
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

November 2004
October 2004
September 2004
May 2004
April 2004
March 2004
January 2004

December 2003
November 2003
October 2003