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HoganHouse
Registrace 6. 08. 2007
Saving Case & Friends is a nonprofit Hunter Syndrome research foundation. Join our effort to raise funds for a cure for Hunter Syndrome. The inspiration for the foundation is our son Case, 7 years old, who was diagnosed with Hunter Syndrome in 2009 and who simply longs to play with all of his friends - other boys with the same condition. They understand each other and see the world in an innocent and unique way. Help us save Case and his friends by sharing these videos and our message.
Case riding a Jetson electric scooter (2017)
After 7 years on SHP609, Case easily learns to ride an electric scooter, even though the age suggestion is 13+ and Case is only 10 years old. And he has severe form of Hunter Syndrome. #SHP609works
zhlédnutí: 615
Video
Melissa Hogan, Patient-Centered Clinical Trials
zhlédnutí 113Před 8 lety
Melissa Hogan, President of Saving Case & Friends and a Rare Disease Patient Strategist, speaks at the eyeforpharma Patient-Centered Clinical Trials summit in Philadelphia on October 19, 2015
Kris Allen & Ben Lou steal the show at the Global Genes 2015 Tribute to Champions of Hope!
zhlédnutí 321Před 8 lety
Kris Allen performed at the RARE Tribute to Champions of Hope, hosted by Global Genes, with Ben Lou, a young man meeting the challenges of the degenerative rare disease Spinal Muscular Atrophy (SMA). The annual gala, held in Huntington Beach, California, honors those who are uniquely attacking the challenges they face in the fight against rare disease; those who are thinking outside of the box ...
#HunterSyndromeLive - Day 11 Vlog (How to Get Frostbite and Arrested at the Nashville Airport)
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 10 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 9 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - No good answer
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 8 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 7 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Good (early) morning
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 6 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 5 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 4 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - Day 3 Vlog
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - OTPT
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Inside a #RareDisease Clinical Trial - a live blogging event
#HunterSyndromeLive - What Case Does When the Doctors Leave
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#HunterSyndromeLive - What Case Does When the Doctors Leave
#HunterSyndromeLive - Going to Carolina
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#HunterSyndromeLive - Going to Carolina
I love this more every time I watch it.
You did not tech me ride it
Fhdub
It is such a shame these life improving jobs are so expensive. I hope that Case can carry on getting what he needs. Thank you for this video, it's very informative. :) I think this sort of thing is important, particularly in the midst of this whole Daraprim case at the moment. It's a shame some of these pharmaceutical companies are headed by such empathy-lacking individuals. It's videos like these that help give an insight into the actual sufferers' lives, rather than an outside look at the profits and expenses. :)
Loved this - Ben nailed it - a boy of huge strength! Also thanks to Kris for participating in such an important event.
I cannot get over how handsome he looks in this video!!!! OH MY GOSH!!!
Which of these is the intrathecal injection? When I look on your blog, the tattoo looks like it is on the port on the other side of his body. Just trying to see which part of the IT infusion. Also, how long do the IT infusions last? Thanks! Roy
I love this!
I love this one! He's so happy!