A Worthwhile Cause
Filed under: Inspiration
CLICK HERE to read up on and donate to a very worthwhile cause.
"The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected.
The Tuberous Sclerosis Alliance (TS Alliance) — the only national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC) — is a membership-based organization; members have voting privileges at the organization's annual meeting. It is also the lead organization for the funding of medical research related to TSC. Such medical research has included the breakthrough discovery of two genes (TSC1 and TSC2) that are known to cause the disorder."
Posted: December 2, 2008 at 10:44 am
Go to hell…how much have you donated you cheap fuck!?!
Yeah, not interested in this cause, so many more worthy…
Perez,
THANK YOU so much for posting this. My 20 year old brother and father have both been diagnosed with this genetic disorder since birth. Currently my younger brother is hospitalized due to a massive brain and kidney tumor this disorder caused, and he is awaiting a dangerous surgery tomorrow to attempt to remove the brain tumor. This disorder is extremely under- funded and under- researched, therefore there is no cure. My brother has suffered through over two weeks of experimental drug therapy thus far with no sucess, and I am certain if only more people knew about this disorder then maybe things would not be so difficult. Again, thank you for posting this.. and I am sorry to see the two ignorant comments that have been posted so far on this topic. I guess people only care about things that directly affect them. It's a shame.
Thanks again,
~Karolin~
Thanks for posting this Perez. My BFF's son was born with Tuberous Sclerosis. He has suffered greatly in his young life.
Re: DaisyBaby – SERIOUSLY… DAISY BABY and all the other ignorate comments! I can't even believe someone would write such a thing. WELL - just to let you know a very good friend of mine's 1 year old daughter just had BRAIN SURGERY for this disease LAST WEEK to eliminate 20+ seisures a DAY…. SOOOO YES IT IS A WORTHWHILE CAUSE! AND the sad thing it's just not a known disease and if more people like you would read about it maybe TSC will get more recognition and funding that is so desperately needs! THANKS Perez for posting this!
Maybe Perez didnt explain this disease well enough for you idiots to understand! My daughter has TSC. She was born with 2 heart tumors and multiple tubers in her brain. Her lungs, kidneys and skin will probably be affected with tumors in her lifetime. It affects all major organs. Cassidy has had a total of 4 brain surgeries including a hemispherectomy where they removed the left side of her brain in June, she is 4 yrs old!!!! No one has heard of this disease until it is in their lives and more people have it than cystic fibrosis and Lou Gehrigs. Thanks Perez for posting this info. If anyone with a brain wants to read about my daughters story you can read it at www.caringbridge.org/visit/cassidyconway
My daughter's 13 and has too many tubors on her brain to count! Uncontrolled seizures, 8 tubors on her heart, a mask of tubors on her face (looks like a bad case of the acne), a kidney tubor and a bunch of other crap!!! We're looking into brain surgery, however, insurance is fighting us every step of the way.
Ignorant, ignorant people! Yours is coming to you and when it gets here…you remember that you brought it on yourself!!!
So disappointing to see people write ” so many more worthy” …
TSC affects more people that you would think. The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed.
There are so many aspects to TSC - such a complex disorder- we definitely need all the support possible.
The TS Alliance is the only national voluntary health organization dedicated to finding a cure for Tuberous Sclerosis Complex (TSC) and improving the lives of those affected. TSC is a multi-system disorder that causes tumors form in various vital organs, primarily the brain, heart, eyes, kidneys, lungs and skin. People with TSC often develop epilepsy, autism and learning and behavioral problems. Currently there is no cure. TSC is estimated to affect nearly 50,000 people in the U.S., and more than 1 million worldwide.
I deem this organization and cause to be VERY worthy. And hope that others will see the need to donate to this cause.
Im so appreciative that this was posted…many thanks Perez. The TS Alliance has made huge strides over the past 40 years and it all began with 4 moms trying to find a way to help their children cope with this devastating disease. My mother was one of those 4 moms…and I am proud to continue what she began so long ago. Though my sister who had TSC is no longer with us, the fight still goes on for all of the people still battling. I encourage all of you to take a moment and visit the TS Alliance website (www.tsalliance.org) and learn just a bit about this disease and how close we are to a cure.
People who comment on other more "worthy" causes are clearly under/uneducated about the true scope and impact of this disease. Individuals with this disease can be affected in a multitude of ways (seizures, mental retardation of varying degrees, tumors, impaired fine and/or gross motor skills, and other cognitive delays, just to name a few). I have a younger sister affected with this and due to TSC, she will NEVER live independently. She functions at a 24-36 month old cognitive level and she is 16 years old. Please donate and/or learn about this worthy cause before you make leave ignorant and vapid comments.
THANK YOU PEREZITO!! BESOS!! TSC affects more people than you think (it even gets called out on "House"–and how can you possibly resist learning about anything that comes out of Hugh Laurie's hot hot mouth?) My oldest friend is a warrior for this cause–her sister passed away last year–and the more people learn about it (she got Ryan Seacrest to pronounce it correctly on Idol last year!) the closer we will get to a cure. Just donate a pomegranate martini's (or even a decent beer's) worth! Mil gracias
I am so appreciative that this was posted…many thanks Perez. …Love you…….
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Seroiusly DaisyBaby! You are either very ignorant or have no compassion at all. You obviously have no idea what tuberous sclerosis is. Before you decide if a cause is worthy or not, maybe you should do some research! I have 2 kids who suffer from this devastating disease, and believe me, if you knew them you would believe in the cause. My 10 year old son functions like a 2 year old. He has had 2 brain surgeries to try to stop his seizures. He has tubers on his brain, kidneys, eyes and skin. My 3 year old daughter functions like an infant. She has several seizures every day, and has tubers on her brain, eyes, and heart. This disease needs all of the exposure it can get to make people aware. The Tuberous Sclerosis Alliance is a very worthy cause. Please do not disrespect something you obviously know nothing about! I would not wish this disease on my worst enemy. Get yourself informed about causes DaisyBaby before you deem them not worthy! Thank you Perez for bringing attention to this. Even if you help one uninformed person gain some insight and compassion, you have done something amazing. You have helped bring attention to a very worthwile cause! Thank you!
Thanks for putting a spot light on this amazing cause. I know we all have our cause of choice, but does that make any cause more or less worthy? If I could afford to, I would fight for any cause that improved the life a child. My son, Remy, is 14 months old and suffers from Tuberous Sclerosis. In June of last year he had to have 40% of the right side of his brain removed because of brain tumors that cause horrible, and constant siezures. I had to watch my 9 month old son lay in a bed while tethered to an EEG machine by his brain for almost a week before they could go back in and remove the brain tissue that had been damaged (one entire cortex was deemed "dead" as a result of his seizures). DaisyBaby, I hope you never have to experience anything near what we have. I understand that you can't connect, but please don't assume or claim that my innocent baby isn't worth fighting for. We are all valuable, and all deserve a chance at a quality life. Thank you Perez.