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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

MD-CARE Act Passed!

Posted on September 18, 2014 at 10:13pm 0 Comments

Duchenne Community Knows No Bounds

Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our…

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PPMD Submits Cardiac Recommendations to FDA

Posted on August 18, 2014 at 1:00pm 0 Comments

As you know, PPMD recently facilitated a multi-stakeholder process involving patients, parents, investigators, industry, and other interested parties which culminated in a draft guidance document…

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Duchenne in Paradise

Posted on August 7, 2014 at 10:30am 1 Comment

Every year I try to escape the real world for a couple of days and retreat with my family to probably my favorite place on Earth – Dowagiac. I’ve reminisced before, but this place is magical to me. It is my childhood, it is summer, it is magic. With so much going on in our community –…

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Remembering Scott – In his own words

Posted on August 4, 2014 at 10:30am 0 Comments

I had no words for Scott’s death. In fact, he had been actively dying for several years. I had hoped that he might see Rebekah for one last time, though I realized they were both too sick and living in different countries made it impossible. The good news is that many people with Duchenne never find…

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BREAKING NEWS: Houses of Representatives Passes MD-CARE Act Amendments!

Posted on July 28, 2014 at 6:12pm 0 Comments

The House of Representatives today approved the landmark MD-CARE Act so the law can continue getting results for all patients impacted by Duchenne and other forms of muscular dystrophy. The House approved the bill, H.R. 594, sponsored by Congressman Dr. Michael Burgess of Texas and Eliot Engel of New…

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Latest Activity


Staff
Pat Furlong's blog post was featured

MD-CARE Act Passed!

Duchenne Community Knows No BoundsToday – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our community. And, today the Paul D. Wellstone MD-CARE Act Amendments of 2014 (HR 594/ S 315)…See More
3 hours ago

Staff
Pat Furlong posted a blog post

MD-CARE Act Passed!

Duchenne Community Knows No BoundsToday – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our community. And, today the Paul D. Wellstone MD-CARE Act Amendments of 2014 (HR 594/ S 315)…See More
15 hours ago

Staff
Pat Furlong posted a blog post

PPMD Submits Cardiac Recommendations to FDA

As you know, PPMD recently facilitated a multi-stakeholder process involving patients, parents, investigators, industry, and other interested parties which culminated in a draft guidance document “Guidance for Industry: …See More
Aug 18
Joyce Carpenter commented on Pat Furlong's blog post Duchenne in Paradise
"I still remember the diagnosis of DMD in Feb. of 1995 when Ben was 9.  My sister was in the OT program at WMU at that time and I was compelled to share this with my brothers and sister.  We had planned on meeting for the lunch the week…"
Aug 15

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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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