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Pat Furlong Female Middletown, OH United States: Favorite

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Pat Furlong's Groups

Duchenne Smiles

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Duplications

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Coach to Cure MD

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Carrier Moms

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Duchenne Parents

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Pat Furlong's Discussions

In Memory of Shelley Burks White

Started this discussion. Last reply by Colleen Jun 11, 2009. 6 Replies 0 Favorites

15 things about your family that make you smile

Started this discussion. Last reply by Christine P. Apr 25, 2009. 8 Replies 0 Favorites

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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 and State:: Middletown

Country:: OH

Pat Furlong's Blog

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Priorities (Two Moms, Co-Blogging)

Posted on May 6, 2012 at 11:18pm 1 Comment 0 Favorites

Getting it all done and figuring out what needs to be done first. Everyone, whether you are dealing with Duchenne or not, feels the pressure of time and faces a daunting, ever-growing to-do list. But when you’re dealing with a disorder like Duchenne, that clock ticks louder. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth try to sort through priorities and what in our lives deserves more of our time and energy. Please take a moment…

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Conquering the canyon to end Duchenne

Posted on April 30, 2012 at 11:30am 2 Comments 0 Favorites

One thing about conquering the canyon: before you see it, it seems ok, reasonable, even possible. The moment you see THE GRAND CANYON, you think WTF and how does this 'conquer' business really work and where was my head when I was laughing and taking bribes? On day one, we meet the guides (Gene and Jo Ann Taylor), who discuss various trails, share their experiences and answer…

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The 2012 West Coast Connect Meeting

Posted on April 19, 2012 at 9:44am 1 Comment 0 Favorites

How many times have you explained something that happened, but in the retelling, the moment lost its punch?

I’m a fan of technology. Really. I love it that we are able to participate in meetings and conferences in real time, from anywhere in the world. It encourages, incentivizes,…

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Getting it all done (Two Moms, Co-Blogging)

Posted on April 5, 2012 at 12:53pm 4 Comments 2 Favorites

Everyone is in a race against the clock these days. Nowhere is that more the case though, than in this community. Dealing with Duchenne, on top of everything else life throws at you, can leave you feeling overwhelmed, inadequate, and exhausted. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth discuss the ways we cope with this ticking clock while keeping our families happy, our son’s healthy, and our sanity in check. Read this month’s…

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Bikram Yoga meets the Grand Canyon

Posted on March 28, 2012 at 11:00am 0 Comments 0 Favorites

Bikram yoga. Michelle had just been home talking about her Bikram practice. We talked about it a lot over the holidays. Michelle had been practicing for nearly 5 years. I wondered if I could survive 90 minutes in 105 degree heat. I had a range of readily available excuses; the easiest one was that there was no Bikram in Cincinnati, Ohio. And my unspoken reason was that I hesitated because I…

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Latest Activity

StaffPat Furlong's blog post was featured

Priorities (Two Moms, Co-Blogging)

May 10

1 Comment 0 Favorites

Hafiz Issadeen commented on Pat Furlong's blog post Conquering the canyon to end Duchenne

"Wow.. What a fantastic achievement! God bless you all!"

May 8

David Stalling commented on Pat Furlong's blog post Priorities (Two Moms, Co-Blogging)

"Good thoughts and advice; thanks for sharing! I have been thinking a lot about my priorities lately. I have recently been so obsessively focused on helping to create more awareness of, and support for finding treatments and a cure for my son Cory…"

May 7

StaffPat Furlong posted a blog post

Priorities (Two Moms, Co-Blogging)

May 6

1 Comment 0 Favorites

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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

At 3:02am on June 13, 2010, shashi champaneria said…: Hi Pat
Its good I've discovered this site. My brother, Vijay who had DMD, past away in 1984. Since then my attenttion drifted away from muscular dystrophy. Whilst Vijay was alive, I actually got involved in muscular dystrophy research and worked for example with George Karpati in Montreal. One of the things we attempted was myoblast transplantation, but we did have difficulties with this project. I moved away to work on a different research project, muscle/nerve development in Calgary. Any way now that I have found PPMD, it can keep me up to date with the latest developments. Also its so good to allow parents to have their say.