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Hello from your Advocacy Ambassadors

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  • July 21, 2014 at 11:11 am #75338
    Hello from your Advocacy Ambassadors

    Hello Everyone!

    The Muscular Dystrophy Campaign has a network of Advocacy Ambassadors. Our Advocacy Ambassadors are all affected – directly or indirectly – by a neuromuscular condition and have knowledge and personal experience of navigating social and health services.

    Some of the Ambassadors are here on TalkMD and are happy to answer your questions!

    You can find out more about the Ambassadors on the website here:

    Meet the Ambassadors

    Best wishes,
    Maddy

    AdvocacyAmbassadors
    Participant
    Posts: 6
    Joined: 30/06/2014
    February 3, 2015 at 12:25 pm #94492
    Re: Hello from your Advocacy Ambassadors

    Hello Maddy :waving:

    And hello Ambassadors :waving: [we won’t bug you for frerreo roche choices :lol: ]

    Welcome to the wondrous world of TalkMD we look forward to your posts, as you can offer experience and knowledge from both sides of the fence.

    Further down the Board Index Page there are threads for specific geographical regions which you may also like to post away in.

    Any problems just holler – we will do what we can to help

    :welcome:

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    February 3, 2015 at 5:20 pm #94493
    Re: Hello from your Advocacy Ambassadors

    These people are good !!!!!

    Had a problem last week on insurance, its complications and implications.

    Phoned up and they spent a lot of time talking it over with me, then they went off
    consulting other people and came back with a mountain of good advice.

    Very pleased indeed !……….and it was a lady called Maddy (must the the same, too much of a co inky dink).

    All is well with the World !

    :guitar: :music: :ty: :music: :guitar:

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    February 3, 2015 at 11:36 pm #94494
    Re: Hello from your Advocacy Ambassadors

    Hello and welcome aboard, look forward to getting to know you all.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    February 4, 2015 at 10:31 am #94495
    Re: Hello from your Advocacy Ambassadors

    :waving: great to have you with us!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    February 5, 2015 at 11:46 am #94496
    Re: Hello from your Advocacy Ambassadors

    Hi Everyone,

    Thanks for the warm welcome :D

    Looking forward to getting to know everyone too!

    And taungfox thank you for your kind words, I hope you made some progress with your insurance!

    Best wishes,
    Maddy

    AdvocacyAmbassadors
    Participant
    Posts: 6
    Joined: 30/06/2014
    February 5, 2015 at 12:11 pm #94497
    Re: Hello from your Advocacy Ambassadors

    Hi, I’m Liz one of the Ambassadors. I have FSH-MD, so I guess you could say this is my specialty. I was at one time a Medical Secretary before I had children so I do know my way a bit around the NHS system and have been through adapting my own home. I will be at the Muscular Dystrophy Campaign’s Muscle Group Meeting in Milton Keynes on 27 February 2015 (weather permitting), I always enjoy the meetings and learn something new each time. Looking forward to hearing from everyone.

    Liz

    Ambassador LizWill
    Participant
    Posts: 1
    Joined: 30/01/2015
    February 5, 2015 at 4:25 pm #94498
    Re: Hello from your Advocacy Ambassadors

    Hello,

    My name is Martin Hywood , 41 years old, married, father to three great girls and live in Bucks. South East Ambassador living Limb Girdle Muscular Dystrophy.

    Also involved with trail blazers (time permitting), fund raising and blogging about living with Muscular Dystrophy.

    If you have anything to ask then please do.

    Here To Help.

    Ambassador-Martin
    Participant
    Posts: 1
    Joined: 05/02/2015
    February 5, 2015 at 6:47 pm #94499
    Re: Hello from your Advocacy Ambassadors

    Welcome to all the ambassadors, except Martin… unfortunately that plank is me brother :bang: :rollover:

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    February 8, 2015 at 3:55 pm #94500
    Re: Hello from your Advocacy Ambassadors

    Hi :waving:

    I’m Elly, one of the Advocacy Ambassadors in the North West.

    I was diagnosed with a congenital myopathy just over 10 years ago in my early 30s. I work 3 days a week, and enjoy swimming in my spare time. I’m usually at the muscle groups in the Manchester/Cheshire area.

    AmbassadorElly
    Participant
    Posts: 5
    Joined: 05/02/2015
    February 11, 2015 at 2:17 pm #94501
    Re: Hello from your Advocacy Ambassadors

    Hi my name is Jen. I am 32 from Middlesbrough and I am the regional ambassador for Trailblazers for the Northeast region.

    I was diagnosed at 2yrs with Spinal Muscular Atrophy (SMA) type2

    I have come on here to give advice to anyone that requires support …. I will try my very best to get the correct info to you asap

    Feel free to contact me here or by the ambassador email if it is a more private matter.
    ambassadors@muscular-dystrophy.org

    Chat soon :waving:

    AmbassadorJenNE
    Participant
    Posts: 3
    Joined: 11/02/2015
    April 1, 2015 at 12:54 pm #94502
    Re: Hello from your Advocacy Ambassadors

    Hi! I am new here. I want to learn.

    Park10a
    Participant
    Posts: 1
    Joined: 01/04/2015
    August 16, 2016 at 12:41 pm #136399
    Reply To: Hello from your Advocacy Ambassadors

    Hello. My name is Mary. I am 68 and have myotilin based myofibrillar myopathy. I have a cousin with the same condition, which must have been passed down to us from our grandmother.
    I am still walking, with a stick, but slowing down quite a bit each year. I enjoy travelling and also aqua aerobics which I try to take part in around 3 times a week. I invested in mobility scooter earlier this year which is great as it fits in the boot of my car. Now I can keep up with my partner and grandchildren when we are out and about .Although my patner Alan had to lift it out for me

    maryhazel
    Participant
    Posts: 0
    Joined: 16/08/2016
    August 19, 2016 at 3:23 pm #136586
    Reply To: Hello from your Advocacy Ambassadors

    Hi Maryhazel,

    Great to hear from you, your experience sounds like a great example of a really beneficial aid in your mobility scooter. Would love to hear a bit more about some of the travelling you have been able to do! If you ever wanted to talk to someone who is in a similar position we can put you in contact with a peer support volunteer or an advocacy ambassador.

    Just email ambassadors@musculardystrophyuk.org for further information or visit their page: http://oldsite.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/advocacy-ambassadors/

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    January 8, 2020 at 4:08 pm #184391
    Reply To: Hello from your Advocacy Ambassadors

    Hello
    I am a 66 year old male with Myotonic Dystrophy DM1,
    Diagnosed in 2015 but already show signs before that.
    Mbowl

    mbowl
    Participant
    Posts: 0
    Joined: 08/01/2020
    November 10, 2020 at 5:08 pm #190742
    Reply To: Hello from your Advocacy Ambassadors

    H :new: HELLO. FONT TOO SMALL SO CANT WRITE MUCH.
    AM NEW.

    greyhazylady
    Participant
    Posts: 0
    Joined: 10/11/2020
    November 10, 2020 at 5:09 pm #190743
    Reply To: Hello from your Advocacy Ambassadors

    :wave:

    greyhazylady
    Participant
    Posts: 0
    Joined: 10/11/2020
    November 10, 2020 at 6:26 pm #190753
    Reply To: Hello from your Advocacy Ambassadors

    :welcome: greyhazylady

    Glad to have you on board.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    November 10, 2020 at 6:30 pm #190754
    Reply To: Hello from your Advocacy Ambassadors

    Hello and thanks, once i sort out this very small font i will write more. :ty:

    greyhazylady
    Participant
    Posts: 0
    Joined: 10/11/2020
    November 10, 2020 at 6:37 pm #190756
    Reply To: Hello from your Advocacy Ambassadors

    Hello, sorry to hear of your condition, can i ask how did it manifest its self and how did you get a diagnosis?
    I am 50 and have had some muscle problems for a couple of years but stiLl i dont know what is wrong. I have been to a neurologist for nerve conduction test but it was too painful to go through with it.
    I never realised how many different conditions there were until I went on this web site.
    thanks. :yes:

    greyhazylady
    Participant
    Posts: 0
    Joined: 10/11/2020
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