Video Diary

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Huntington's Disease

Huntington's Disease Video 2010

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Rare Disease of Interest: 
Huntington's Disease
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Reddy for a Cure - Toronto

Members of the CF community dyed their hair red in memory of Eva Markvoort, a young woman who lost her battle with cystic fibrosis earlier this year. Hundreds of people in Toronto and Vancouver participated in Reddy for a Cure, and sported their red coifs at the Great Strides Walk on May 30, 2010. This footage was taken in Toronto at Mankind Grooming.

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Rare Disease of Interest: 
Cystic Fibrosis
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Is this a spasm, seizure, or tic?? Please help.

Keagan is 3 years old and has Cerebral Palsy. Keagan has been doing these jerking motions and spacing out for the past year. She started off only doing it once/twice a week now they happen several times a day every day. We have had 3 EEGs which came back normal and a CT which was normal. All her doctors said it's behavioral but I don't agree. Please let me know what you think.

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Rare Disease of Interest: 
Infantile Spasms
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Is this a Myoclonic seizure? Infantile spasm?

My son, who has always been kinda fidgety, recently started doing these "happy fingers" a couple months ago when we introduced solid foods at 4 months. He also stiffens up his legs a lot (again when he seems excited). He doesn't do it all the time, as you will see in the video...when his hands are occupied or he's playing with a toy, he's not wiggly. He starts wiggling his fingers at about :07. At about 1:25 he has a slight jerk. He is now almost 9 months and it hasn't stopped. We are starting to get concerned it's something neurological.

Category: 
Rare Disease of Interest: 
Infantile Spasms
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Andrew having Infantile Spasms

This is my son Andrew, he's 4 months old and was diagnosed with Tuberous Sclerosis at birth. I took this video when we were in the hospital to show it to the doctors, he started doing these weird movement that we thought were normal at the beginning, but then became more frequent and severe, and it turn out to be nfantile spasms. He started the ACTH shots for 6 weeks to control the seizures, we're now on week 2 and these last 2 days he didn't have any spasms, we hope he continues to respond good to the treatment, we preay for him every day!

Category: 
Rare Disease of Interest: 
Infantile Spasms
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Is this a Myoclonic seizure? Infantile spasm?

My son, who has always been kinda fidgety, recently started doing these "happy fingers" a couple months ago when we introduced solid foods at 4 months. He also stiffens up his legs a lot (again when he seems excited). He doesn't do it all the time, as you will see in the video...when his hands are occupied or he's playing with a toy, he's not wiggly. He starts wiggling his fingers at about :07. At about 1:25 he has a slight jerk. He is now almost 9 months and it hasn't stopped. We are starting to get concerned it's something neurological.

Category: 
Rare Disease of Interest: 
Infantile Spasms
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Multiple Sclerosis Music Video - Tattoo

After singing along to this song by Jordin Sparks I realised some of the lyrics reminded me of MS... MS is kind of like having a tattoo - it'll always be there... we've got to learn to live with it... (hopeul for a cure though!!) So I decided to make a video to show my thoughts using the song and some pictures! (PS all the pictures of tattoos are 'photoshopped' by me!)

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Rare Disease of Interest: 
Multiple Sclerosis
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Multiple Sclerosis with No fear !

I was diagnosed with Multiple Sclerosis in 1988, partially blinded in 1993 and wheelchair bound in 2005, i learned to control this chronic and often disabling condition resulting in what appears to be a full recovery. I would now like to share the benefit of this experience with you. I provide all the information that a newly diagnosed person or there carer would need to know and tips to help combat this condition.

Category: 
Rare Disease of Interest: 
Multiple Sclerosis
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Multiple Sclerosis: Kerri on her diagnosis of MS

My MS Journey - Vid2

Category: 
Rare Disease of Interest: 
Multiple Sclerosis
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[Symptoms of Multiple Sclerosis]

[Symptoms of Multiple Sclerosis] Just taking a few minutes to share some of the wonderful symptoms that come along with MS.

Category: 
Rare Disease of Interest: 
Multiple Sclerosis

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