Comments on: The Push To Cure Spinal Muscular Atrophy

By: Leah

Leah — Wed, 01 Apr 2009 14:58:04 +0000

my sister is 17 years old, she’ll be 18 on my 25, 2009 and she is a survivor of spinal muscular atrophy type 2. its sad to hear you, as parents say your going to most likey lose your daughter before she’s 2 years old. what you should be saying is that your daughter is going to be a survivor. i belive your looking at this disease in the wrong way. you should be encouraging the life of your daughter. give your daughter confidence as i give to my sister.

my name is leah and ive signed the petition. **

By: v.v.s

v.v.s — Sun, 22 Feb 2009 04:27:49 +0000

very encouraging effort , keep it up .This is a new way to make people realize about the difficulties that SMA patients have to face .This cannot be done without public support, so everyone should support this in whatever way they can.

By: sohbet

sohbet — Sun, 08 Feb 2009 00:58:02 +0000

Signed the Petition
Good cause and work there.

By: perde

perde — Sun, 21 Dec 2008 10:59:21 +0000

good

By: Don

Don — Thu, 09 Oct 2008 16:40:29 +0000

Thanks so much for this Mike. I’m the father of a fantastic 3-year-old boy with SMA Type II. Some days the only thing that keeps us going is the hope for breakthroughs in stem cell therapies, and drug therapies. We’re close, I know we are. Any coverage we can get for this under-exposed disease is very appreciated by many parents…

By: Gits

Gits — Wed, 01 Oct 2008 10:41:42 +0000

I think you are pretty sick and need more help for saying this. How can any living being with a heart not fight against such a deadly disease. These parents are fighting for a lot of kids and everyone should sign and support this noble cause. SMA should find a cure as everyone has a right to lead a good quality life. The cure needs financial assitance and awareness and lots of funds so everyone should help in finding a cure to this fatal disease.

By: Annette Reed

Annette Reed — Mon, 08 Sep 2008 01:44:37 +0000

Thank you MIke for posting this. SMA IS a horrible disease! My family and friends have raised over $1 million with 100% going to research but it is not enough. Families have been raising money and awareness for years now. Families taking care of these children should NOT also have to raise money to find a cure. Our government holds the future of our children in their hands just by signing this bill. NIH has already increased the funding (which is still less than it should be). This bill insures collaboration among researchers and secures the funding.
If any of our senators, congressman and president had a child with SMA or knew a child with SMA they would sign this bill in a heart beat. Babies are dying- parents have to watch their hopes and dreams slip away. Thank you to all who have signed the petition.

By: Edmund Lee

Edmund Lee — Sun, 07 Sep 2008 19:01:26 +0000

I am a SMA parent. So encouraged to see this type of post on TechCrunch. Thank you everyone.

By: john

john — Sun, 07 Sep 2008 15:42:57 +0000

I was thinking the exact same thing… a weekly or monthly post to a worthy cause such as this. With hundreds of thousands of readers each day, a difference could definitely be made!

By: Joshua H. Bolin

Joshua H. Bolin — Sun, 07 Sep 2008 06:37:28 +0000

Kudos to Tech Crunch…

Thanks for the link.

jb.

By: Aaron Dragushan

Aaron Dragushan — Sun, 07 Sep 2008 03:16:36 +0000

Dean, really sorry to hear of your loss. I can only imagine what you must have gone through.

Thanks for posting this Michael.

By: Dean Worth

Dean Worth — Sun, 07 Sep 2008 01:18:02 +0000

My little boy, Aeon, died of SMA1 a few months ago, just short of his first birthday. He slowly lost the muscular strength to move, swallow, and then breathe. I’m glad to see SMA get some exposure in the startup world – every bit counts. I hope this helps find a cure asap. Thanks Mike.

Here’s a pic of my beautiful son: http://www.chin...ng.com/aeon.jpg

By: J.

J. — Sun, 07 Sep 2008 00:53:47 +0000

If Bush vetoes this, it serves only to prove that he’s not fit to own a fish, let alone lead a country. Anyone with a conscience and common sense should want this disease to be eradicated.

By: Ivan Drago

Ivan Drago — Sun, 07 Sep 2008 00:17:13 +0000

Republicans dont believe in science. They will never let something like this pass and/or Bush will veto it.

By: Richard Price

Richard Price — Sat, 06 Sep 2008 21:29:08 +0000

Yes, I completely agree. This is a wonderful thing to do.

By: Ahmad

Ahmad — Sat, 06 Sep 2008 21:11:44 +0000

Great Job Mike, May God bless you and your family

By: A Weekend Honeypost | Ugh!!'s Greymatter Honeypot

A Weekend Honeypost | Ugh!!'s Greymatter Honeypot — Sat, 06 Sep 2008 21:02:34 +0000

[...] The Push to cure Spinal Muscular Atrophy: Great write-up by Mike Arrington [...]

By: RahulC

RahulC — Sat, 06 Sep 2008 21:01:00 +0000

Petition Signed

By: Josh

Josh — Sat, 06 Sep 2008 20:42:52 +0000

Definitely signed. And as for “signing with your wallet,” I happen to know Bill and Victoria and know that those that have signed this petition have caused over 47 reps and senators to take a position in favor of curing this terrible disease. Think about it – FORTY SEVEN dominos falling into place from one person telling another telling another and yes, every dollar that the government gives helps.

By: Thinh Vu

Thinh Vu — Sat, 06 Sep 2008 20:41:53 +0000

I remember watching a Japanese drama about a teenage girl that discovered she had Spinal cerebellar ataxia at the age of 15, and later died at the age 0f 23. Spinal cerebellar ataxia is a similar disease to this, and I would love to help out. The drama was so emotional it helped me connect with those else who suffered under the disease.

Petition signed.

By: Bill Strong

Bill Strong — Sat, 06 Sep 2008 20:30:56 +0000

Michael:

Thank you from the bottom of my heart for bringing attention to SMA; the #1 genetic killer of infants that nobody has ever heard of. SMA families have been fighting for years on friends-and-family funding to end this horrible disease and they have accomplished so much with so little. Researchers are a few years away from taking that last critical step and all that is needed is some organization and resources that the NIH, through this Act, would be able to provide.

If anyone would prefer to “vote with their wallet”, I’d recommend donating to FightSMA, a pure SMA research focused fund that we are working closely with – http://www.figh..._a_contribution. I’m sure they would be grateful for your support of this worthy cause.

Take it from someone who knows, this disease is torture. These babies minds and spirits are no different from any healthy baby, but their bodies slowly fail them. But there is hope and we are doing everything in our power to help turn that hope into reality.

Thank you again Michael and thank you to everyone who has decided to sign on in support of our petition.

By: Allen

Allen — Sat, 06 Sep 2008 20:23:15 +0000

Nice job Mike – signed. Perhaps next month you can toss in a word for autistic children. My son is autistic and it’s always nice to hear a shout out from those that have the large podium.

By: Ambuj Saxena

Ambuj Saxena — Sat, 06 Sep 2008 20:12:29 +0000

Coincidentally, Don has tackled the issue you are raising in another of his posts: http://cafehaye...such-stand.html

By: Ambuj Saxena

Ambuj Saxena — Sat, 06 Sep 2008 20:08:51 +0000

Then, perhaps, a better way would have been to ask 50,000 people to donate $20 for the research thereby immediately raising a million dollars. This way it would have exercised the most powerful voting mechanism in practice today: Voting with your wallet.

By: Michael Arrington

Michael Arrington — Sat, 06 Sep 2008 19:53:51 +0000

yeah, i’m probably more libertarian than anyone else reading this, but come on. a few million dollars to find a cure for a disease isn’t the place to take a stand on the issue of government spending.