Donate

News & Perspectives

Barry

October 20, 2009

The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]

Rick

October 20, 2009

Download Rick’s Story By Rick, Jessie’s Dad My son Jesse was born on Valentine’s Day in 2001. He is now 4 years old and has severe hemophilia. It is hard to believe the amount of emotions that have transpired in the short period since his birth. Life leads us down many paths. The path of […]

Leland

October 20, 2009

Leland is a teenager with hemophilia and an inhibitor who is concerned with lifetime caps and how they affect his future in the bleeding disorders community.

Feds: No more arrests for pot-smoking patients

October 19, 2009

New guidelines will apply in 14 states allowing medical use of marijuana Pot-smoking patients or their sanctioned suppliers should not be targeted for federal prosecution in states that allow medical marijuana, prosecutors were told Monday in a new policy memo issued by the Justice Department. Under the policy spelled out in a three-page legal memo, […]

Starting from zero

October 18, 2009

If you could start from scratch, what kind of system would you design to serve the bleeding disorders community?Would you change the way you receive medical attention? Are you happy with the way product arrives at your home? What might you keep? What would you ditch? The State of Connecticut is beginning to have a […]

2010 State Legislative Preview: New York

October 18, 2009

NEW YORK BLEEDING DISORDERS COMMUNITY MAXIMIZING FORWARD MOMENTUM Despite a Senate Coup, weeks of political gridlock and the normal parlor intrigue which punctuates New York State Politics — Knickerbockers are looking to build on growing momentum out of the 2009 Legislative session in Albany in the New Year. The past year saw legislation enacted which extended […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

HFA is excited to announce that the Forbes’, a family from Upland, California had an opportunity to sit down and talk with President Obama in the Oval Office, Monday, September 14.  To read about their experience please visit the Community News Section of the HFA website and click:  Advocates in Action: The Forbes’ Family Meets […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:   Imagine having the opportunity to visit the Oval Office and meet the President of the United States.  This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his […]

Reflections of Nathan Wilkes’ Testimony before the House Subcommittee on Oversight and Investigations

October 16, 2009

By: Michelle Pascucci Nathan Wilkes was asked to testify before the Committee on Energy and Commerce’s Subcommittee on Oversight and Investigations on October 15, 2009.  The hearing was called “Insured But Not Covered: The Problem of Underinsurance.”  It is a very poignant title because many people in the bleeding disorders community face issues with their […]

Congressmembers Kennedy and McMorris Rodgers want to eliminate lifetime caps immediately

October 16, 2009

Congressman Patrick Kennedy and Congresswoman Cathy McMorris Rodgers would like to expedite elimination of lifetime caps in H.R. 3200.  They are circulating a letter to their Colleagues in Congress to ensure this happens.  The letter will be sent to Speaker of the House Nancy Pelosi.  The Lifetime Caps Coalition is asking that you call your […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.