July 21, 2014 at 11:11 am #75338Hello from your Advocacy Ambassadors
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:
MaddyAdvocacyAmbassadorsParticipantPosts: 6Joined: 30/06/2014February 3, 2015 at 12:25 pm #94492Re: Hello from your Advocacy Ambassadors
And hello Ambassadors [we won’t bug you for frerreo roche choices ]
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
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015February 3, 2015 at 5:20 pm #94493Re: 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 !
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010February 5, 2015 at 11:46 am #94496Re: Hello from your Advocacy Ambassadors
Thanks for the warm welcome
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!
MaddyAdvocacyAmbassadorsParticipantPosts: 6Joined: 30/06/2014February 5, 2015 at 12:11 pm #94497Re: 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.
LizAmbassador LizWillParticipantPosts: 1Joined: 30/01/2015February 5, 2015 at 4:25 pm #94498Re: Hello from your Advocacy Ambassadors
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-MartinParticipantPosts: 1Joined: 05/02/2015February 8, 2015 at 3:55 pm #94500Re: Hello from your Advocacy Ambassadors
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.AmbassadorEllyParticipantPosts: 5Joined: 05/02/2015February 11, 2015 at 2:17 pm #94501Re: 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.
Chat soonAmbassadorJenNEParticipantPosts: 3Joined: 11/02/2015August 16, 2016 at 12:41 pm #136399Reply 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 memaryhazelParticipantPosts: 0Joined: 16/08/2016August 19, 2016 at 3:23 pm #136586Reply To: Hello from your Advocacy Ambassadors
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 email@example.com 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/JoelRParticipantPosts: 0Joined: 01/12/2015November 10, 2020 at 6:37 pm #190756Reply 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.
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