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Pat Furlong
  • Female
  • Middletown, OH
  • United States
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Pat Furlong's Friends

  • Tuyet Lan Thi Tran
  • Christopher M. Jones
  • Nid Hadidi
  • Mary
  • Gonzalo Monteverde
  • Sherri Looper
  • Mary G. Connolly
  • Gerardo Javier reynoso
  • Tammy
  • Dalibor Randjelovic
  • stephen beggs
  • Bruce Farrar
  • Thomas Hilliker
  • Chris Diemler
  • Geraldine Coolidge

Pat Furlong's Discussions

In Memory of Shelley Burks White

Started this discussion. Last reply by Colleen Jun 11, 2009. 6 Replies

15 things about your family that make you smile

Started this discussion. Last reply by Christine Piacentino Apr 25, 2009. 8 Replies

 

Pat Furlong, Founding President & CEO

Profile Information

About me:
President/CEO of PPMD. In my earlier life, MS in Nursing, experience primarily in ICU, CCU, Dialysis, ER . Later taught nursing education and patient education.
Interests - DMD, insuring all of the pieces of treatment and cure are in place.

Read my Bio: http://www.parentprojectmd.org/site/PageServer?pagename=About_media...
About my family:
4 children. Chris and Patrick were diagnosed in 1984, the 'no hope and no help' era that thankfully is OVER.
Jen and Michelle, daughters, now live in Philadelphia and New York.
Husband is a physician.
Name(s) of child(ren)/individual(s) with Duchenne:
Christopher and Patrick
City:
Middletown

Pat Furlong's Blog

A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member

Posted on April 22, 2015 at 3:36pm 4 Comments

Ben Cumbo died last night. While Heaven is brighter today, our world has lost a great light.



I first met Ben in 2001. We testified about the importance of the MD-CARE Act. He was very young then, but his wisdom apparent. He talked about the cost of a Stealth bomber, on average $737 million…

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PPMD Participating in FDA-NIH Dystrophin Methodology Meeting on Friday, March 20

Posted on March 18, 2015 at 9:30am 0 Comments

John Porter and I have been invited to participate in the FDA-NIH dystrophin methodology meeting on Friday, March 20. While we said yes, we realize this is a difficult and painful topic for all of us. Dystrophin feels like the brass…

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BMS & The Voice of the Patient

Posted on January 22, 2015 at 10:30am 1 Comment

For the last two years, global biopharmaceutical company Bristol-Myers Squibb (BMS) has organized a day when all of their drug development project teams from across the world would have the opportunity to take some time to…

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Sarepta Update: 168 Week Data

Posted on January 12, 2015 at 9:30am 3 Comments

This morning Sarepta released the 168 week data on eteplirsen.  

For weeks there has been speculation, guesses, and hope about what we might learn.  We have been following the stories on social media, grateful for every photo or video. We are thrilled that the open label eteplirsen studies (confirmatory study and non ambulatory study) are actively…

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Nearly there!

Posted on December 31, 2014 at 8:51am 0 Comments

We’re so close. Thanks to the strength and generosity of this incredible community, we are only $36,200 from our goal of $400,000 to fund combination therapies. There’s still time for you to help us reach our goal.…

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Latest Activity

Alpa Shah commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"Ben - Thank you for everything you have done for our sons. May your soul rest in peace and continue to provide strength to your loved ones. "
yesterday
Shelly commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"My eyes are tearing down..i can't help...its big loss. May his soul depart in peace. I also salute him."
yesterday
Jennifer Bauer commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"I am so sorry to hear of the loss of Ben.  He was in the PAAC group with my brother, Matt. I am sure all the men in the group are devastated right now."
Wednesday
Klaartje Spijkers commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"Farewell Ben, brave warrior. I salute you and your loved ones. Your brave life is an example for our life and many others with Duchenne. Thank you and fare well Thank you Pat for sharing "
Wednesday

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Comment Wall (86 comments)

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At 1:50pm on June 18, 2012, Tammy said…

Hi Pat,

Do you know if there have been any studies on DMD boys and enzyme deficiencies?  I met with a 5th generation doctor from India that says this is very common, and a cause of many problems with muscular dystrophy patients.

Thanks in advance...

Tammy

At 6:05pm on April 11, 2012, stephen beggs said…

hi pat, just want to let u know that i am finding ppmd an absolutely brilliant resource and support. since my lovely wee nephew ben was diagnosed recently with duchenne, i feel as if i have become an expert on neuromuscular conditions. But we have to, as we have to take control for our boys. I think that you are an inspiration for all that you have achieved so far with pushing duchenne research abd treatment to where we are today. it is looking so much more promising. I recently sent u a friend request and would so appreciate to have u as a friend. God bless you pat and all your team. stephen beggs.

At 2:55pm on December 10, 2011, Lisa Guest said…

Hi Pat, I am happy for you to use photo of my boys. I also got an email fron Wil Nolan for the same request. Wishing you and your family a Merry Christmas...

Lisa Guest

At 10:14am on December 6, 2011, adnan sarwar said…

I m Adnan Sarwar from Pakistan. i m suffering from muscular dystrophy 

i m intrested to get some new research information and meet with other

md and their family for discuss issues related md.pls help me in this

connection.

At 2:46pm on May 15, 2011, Julie Leston said…

Dear Pat,

Thank you so much for responding back. I would love to speak with you. What time tomorrow (Monday) would be a good time to talk to you? My phone # is 847-856-1201 and email address is momsangel0507@aol.com. I do have your cell phone # and will be happy to call you anytime you are available. Take care and thanks again.

 

 Sincerely,

 Julie Leston

At 11:27pm on March 16, 2011, Audrey Tan said…
Pat was wondering have u heard about Dr.Rhodes in corpus christi texas reagarding the sts vecttor treatment?
At 2:03pm on January 24, 2011, Suzanne Desmond said…

Hi Pat,

I just wanted to let you know how happy I am to hear about the Super Bowl & the awareness that it will bring.  I also wanted to let you know that my Minister Rev. Richard Young spoke of you & the article of you & PPMD in the New York Times.  He said so many nice things about you & how your story touched his heart.  His sermon was called "When God comes down".  After the service I gave him a hug & thanked him for speaking about DMD & let him know that he has brought awareness to our congragation.  Just wanted you to know that.

God Bless,

Suzanne Desmond

Orchard Park, NY (Buffalo, NY)

At 7:58am on January 8, 2011, Gerardine Gardezi said…
Thank you Pat ,for replying.As it is all new to me i am slowly trying to assimilate information and this site is a great help.I read in a few places many mums talking about a carrier dvd that is available.Where can i access this?My family as a whole need advice and education as to how best to support my sister and her family.Enable Ireland is my next port of call this month.They will play a major role in the care of my nephew.All the talk of figures etc i find confusing.....different depletions,etc.I hope i will learn as i go along and the support i witness here is brilliant.My eyes have been opened so much here and i don't feel as lost as i was.At the end of the day it is parents and their children here that will guide us best i feel.Thank you for your time,Gerardine.
At 9:07pm on December 18, 2010, Char Burke said…

Hi Pat - Just read the article in The New Yorker.  Excellent article.  And whoever wrote it, sure did alot of background work.  Really enjoyed it.

Happy birthday!  I hope this year is the best year yet for you!  I hope Tom is doing well too and of course, your girls.  Thank you for your leadership, your tenacity and for all you do - Best -Char Burke

At 3:56pm on August 6, 2010, Ian Anthony Griffiths said…
Pat what do you think of this idea to utilize the 'One Voice' slogan http://duchennecommunity.ning.com/profiles/blogs/how-to-speak-with-one-voice?xg_source=activity
 
 
 

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