World changer and World Health Hero Pat Furlong – Belle of Steel # 4

Founder of Parent Project Muscular Dystrophy Pat Furlong

A mother, a nurse, meet World Health Hero Pat Furlong!

In 1969, a young, single Catholic woman graduated from college with a double major, nursing and education.   She was bubbly and vivacious with her curly brown locks.   It was remarkable to the nuns of the all-girls Catholic college who had told her she would never make a nurse.    Her social priorities overshadowed her academic prowness.   At her graduation party, her parents asked her what she wanted for her present.   She looked over at her fiancé, directly.   “More than anything else, I want not to be engaged.”     She stunned the room to silence.

This is just one example of the  “I dare you to say no” dogged tenacity of Pat Furlong.    Motivated by a German mother who was a silent feminist before her time,  Pat moved out of her parent’s home in Cincinnati, Ohio shortly after.  She moved to Columbus, got her first job as a nurse in the Medical Intensive Care Unit and started graduate school at Ohio State.   She just had to learn more about this fascinating thing called the body.   She wanted to know how each cell worked implicitly with the others.    For the first time, Pat felt free and independent.   And it was liberating!

Pat Furlong is now the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), now the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy.   Its mission is to improve the treatment, quality of life, overall care and outlook through research for all individuals affected by this monstrously degenerative, childhood disorder.   Duchenne is the most common fatal, genetic disease which affects 1 out every 3,500 boys each year worldwide.   It currently has no cure.

But Pat Furlong and her team are working to change all that.    In 1984, when both of her boys were diagnosed with Duchenne,  Pat simply could not accept as a mother and as a nurse, the physician’s “there’s no hope and little help. . .they’ll lose the ability to walk, then lose their upper arm strength, then. . lose their life by age 20.”   She wasn’t afraid to tell any doctor just what she thought.  Their answers were not good enough.

Pat’s nursing journey had taken her from the bedside, to patient educator and advocate.   Garnering her gumption Pat immersed herself in learning everything there was to learn about Duchenne.   There was no internet, she physically went to medical libraries and ordered articles and copies of research studies.     She presented herself, not as the teary-eyed mother of two dying boys looking for a miracle.  She knew better.   No, Pat got her foot in many doors, by selling her advocacy as a post-graduate student on a mission of research.   Sadly, there seemed to be no general concensus or standard of care about just what were the best treatment options.  Everyone seemed to be doing their own thing.   It was appalling.  Funding for research was minimal.  No one wanted to hear about a rare genetic disorder.

But for Pat, it wasn’t rare, it was destroying her boy’s muscles, one cell at a time.   And time was running out.   Tragically, both her boys lost their battle with Duchenne in their early teens.   But that didn’t stop Pat.   In fact, standing over their graves, she decided there and then she would not stop until there was a cure.    She remembered her boys telling her, “don’t do it for us, do it for the many.  Miracles aren’t just for one.”

Pat began gathering people around her to ask the tough questions.    With each visit to each expert she asked, “What do we know?   What do we need to know?  What’s the standard of care?  Who’s doing something about it?   And most importantly . . . who’s investing?”   At point in time, the Muscular Dystrophy Association was only investing about a one million a year.   That simply wasn’t enough to fund a cure.  Many feds, the movers and shakers in DC had never even heard of the disease.  It wasn’t on the National Institute of Health’s radar screen because it was a rare disorder.    There were many that told her “just go home.”

But Pat wouldn’t give up.  She had to do it.  She promised her boys.   The defective gene had been isolated back in 1987, but yet there still was no cure.  Pat transformed all of the pain and anger that resulted from profound grief into an unrivaled, energized force.    A DC lobbyist had contacted her; his son was diagnosed with Duchenne’s.    Pat turned to him for advice on how to get Washington to notice.    Gathering a group of other parents of young men with Duchenne, Pat founded PPMD to change to course of this disease.

In 1996, they put on the first-ever  NIH workshop on Duchenne, harnessing a consortium of experts from around the world.   Earning seed funds, they hired a powerful team of DC lobbyists.   There was legislation needed to garner increased funding for research.   In 2001, Senator Arlen Specter took note.   PPMD drafted the MD Care Act, laying out plans for Centers of Excellence to establish standards of care across the nation.

Sam Killian advocate for DMD

One of our Texas DMD boys, advocate Sam Killian.

Pat’s perseverance for her sons paid off.   The legislation passed in Feb of 2001 infusing over 400 million dollars in pivotal Duchenne research.   The NIH took notice which gave researchers a credibility factor.  The moment was literally life changing for many.    In 2010, in the medical journal The Lancet, 180 physicians published a consensus of care considerations for Duchenne.   But the work still is not done.   Pat has bigger plans.   During the next few crucial years of research, as drugs are developed to genetically re-engineer the destructive forces of Duchenne, Pat hopes to see herself smiling.   Her goal is to see more development in combined therapies for Duchenne, more early diagnosis and thus earlier intervention.  She dreams to see boys still walking at 17 and 18.   More extension of life expectancy into the middle thirties, maybe forties.The New Yorker named Pat a World Changer in 2010.  WebMD designated her as a World Health Hero the same year.   She is a top leader at the Institute of Medicine and the FDA.

When asked what makes her successful, Pat describes, “I’m a consummate pest!  If I want something and I know it’s right, I just will not give up.  The pain of losing your children has a ripple effect that lasts forever.  Not a day goes by that I don’t miss my boys.    I channel that pain into productivity.”

For Pat, indeed the mission and the message aren’t over.   For her unbridled passion and stoic, gutsiness to move mountains in a sea of bureaucracy . . . all to save our boys, AgeView Press is proud to honor Belle of Steel number four – the truly amazing Pat Furlong.