Genes

[gadionson1]

^_^

[BirdMoments]

GENES:

/watch?v=_zzCjnvEtgo

[winterstellar]

Yes, America is just as stricken by genetic disorders as everybody else, still millions of ignorant people there fantasize about a "intelligent designer" and even fight important science like stem-cell research or embryonic research... : (

[poeticpaul]

Dear mom on a mission.

You remind me to cry each and every day. Untill there is a cure for your wonderful children. and all the other wonderful sick children across the World.

May God bless you all.

Angel of Hope

[AngelaPalotes]

My daughter suffered Metachromatic Leukodystrophy . She died at age 12, last October. I think the discussion about music, video and technical details is the least we should us to be occupying. I love the video and we should all be united to spread this truth. As a mother who has lost his sick daughter, what matters most to me is that increasingly disseminated the tragedies of living with a rare disease, and to do something soon to get the cure

[tonyhoffmans]

well all this diseases are not really rare they have been with us for ages, but i guess you already knew that. but looking at it from another perspective its just how nature works and understanding more about this genetic mutations might someday help us understand them enough to reverse them. i liked your  video but you misleadingly make seeem Genes like if all where bad.

[instruc231]

See how weak the humans are ....Both of my children having batten ncl2 ...ther is NO one in earth can take you out of it ...except ONE GOD...........Believe and faith  is the only way out...so people you have to submit your self to him what ever is your problem .. Financial .Emotional... medical any think you want ...the only one GOD well be your right answer .

[supermakis]

it is cool that someone actually pays attention to something like that....! but the video is not good....

you say kids inherit 23 pairs.... from each parent...

yeah, but 23 pairs of what? genes? and then you keep calling them, problem genes? that is also wrong... because you mean that only genes can cause something... and not whole clusters of genes...

i mean i study biology and i am really interested in fighting these deseases but people need to understand completly how these are caused

[LarryLawfer]

It is in the caring for others that we demonstrate our true nature. Thank you for your video. I have no problem with the music, feeling it moves the piece along nicely.

[stephlynstill123]

the x-files movie was about an infant scully was working on with sandhoff disease, a lysosomal disorder, in the same family as niemann pick disease. so there is a bit of synergy with the music choice:)

[Amethystwave]

Great video, but an utterly bizarre song choice - the theme from X-files associated with extra terrestrial lifeforms?? what were they thinking?

[seychelle07]

Actually, I think the song was a good choice.

[Amethystwave]

I'd be interested to know why you think that.

I do like the song but within it's own context. Placing the idea of rare human genetic disease along with alien science just doesn't work for me at all.

[AddiCassiFund]

The song is meant to be thought provoking. Genes can do strange things to our bodies -- my kids are dying from their genetic defect. I think the X-Files episodes make people think differently and out of the box.

Also, the X-Files did a segment that covered lysosomal storage diseases (about group of 60 rare human genetic diseases)

I debated on the song and tried countless songs with the topic and this song seemed to work best. If you have a better idea, send me the song and I'll try it! :)

[HDPatientOutreach]

Thank you for a great and informative video! Thousands of children around the world are also affected from Juvenile Huntington's Disease too. I lost my only chld, Kelly to JHD. The world needs to be educated on all of the rare diseases!

Jean Miller

[AddiCassiFund]

Jean - Can we connect to talk about The Project Charity -- The Children's Rare Disease Network? I need to et people involved in the Juvenile Huntington's Disease community involved with us!

[gmcdlpn]

My son died last March of JHD at age 15. If there's anything I can do to help raise awareness I'd love to. Gina

[bernie2563]

Incredible video. Chris and Hugh are not only leading the fight for their own daughters, but for humanity. We should all take their lead and make time to join in on the fight. Thank you and blessings to Chris and Hugh!

[AddiCassiFund]

Thanks for your support. We keep trying to get the word out that rare disease is not so rare.

[caninecountry]

awesome video! I have an 8 year old son with Alports Syndrome, another rare genetic disease which causes the kidneys to fail. Keep passing this around. People do care! Love and prayers to all.

[dvgvintage]

Wonderful video, thank you for keeping me posted. My heart and prayers for all.

[geoholman]

Hugh and Chris Hemple are leading a brave fight. Keep it up!

[specialmommy]

Great video. My daughter is 5 and is undiagnosed with some sort of gentic syndrome. They can't fit her into a box. Many of the diseases listed have been tested for her with normal results each time. People look at me like I have 3 heads when I tell them she is undiagnosed. It never crosses their mind that the medical establishment wouldn't know the answers for her.