Staff

Pat Furlong

Female

Middletown, OH

United States

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

Comment Wall:

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  • stephen beggs

    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.

  • Tammy

    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

  • Kuldeep Singh

    Hi Pat

    Thanks for all your efforts for PPMD and DMD research
    My name is Kuldeep Singh.
    My boy is  4 years 3 months old .His name is Neil Singh.
    He is our only child.
    We are based in Auckland, NZ

    He has been diagnosed with DMD last year with exon 41 duplication
    We can see that he is going downhill day by day

    I saw a webinar for duplication research update
    Hopefully it will help Neil in future

    Just need your advise on some tricky situation that we have got at moment

    We saw a trial starting soon
    http://www.catabasis.com/clinical-trials-cat-1004-movedmd.php

    Requirements for participating in this clinical trial include:

        Boys with a diagnosis of DMD (any confirmed mutation) between the ages 4 and 7 years
        Ability to walk independently
        No corticosteroid use within the past 6 months and no plans to start corticosteroids in the next 6 months

    Our boy will be starting steroids soon

    My wife enquired Joanne Donovan, MD, PhD (Chief Medical Officer at Catabasis) about Neil's participation in trial

    We got a response by email

    "Regarding your son and potential participation in the MoveDMD trial, at
    this time, our regulatory approval and conditions limit us to the U.S.
    only.  This is confounded by the fact that patients residing outside the
    U.S. may not be permitted to travel back and forth with investigational
    product. While some circumstances exist, we are currently working through
    how, if at all, we will be able to support and enrol potential patients
    who reside outside the U.S.  I know this is not the news you want to hear
    but would like to keep in touch with you should circumstances change."

    Joanne was kind enough to call us and discuss it,her concern was if we will be
    able to take any medication to NZ after trial

    When we asked our Neurologist has advised to suggest
    "That your doctor is supportive and that I could negotiate with NZ regulatory
    bodies to try to ensure the medications could enter New Zealand and feel confident I could make this happen."

    We are really confused about this situation
    Neil is 4 years and 3 months now

    We want him to get any possible treatment if it can help to save him

    On the other end we are not sure if we should start his steroids or not as
    we are at the verge  of starting them

    It is really different here in NZ as compared to US in terms of awareness about Duchenne, trials etc
    There is no dedicated Duchenne Centre here

    Doctors are very helpful however  most of times  we are scared about our boy
    Whenever we see our Neurologist, we get more confused

    Can you please advise your thoughts about this as I believe that you
    may have an answer for this