Tuberous Sclerosis Alliance
Tuberous Sclerosis Alliance
Tuberous Sclerosis Alliance

Male
47 years old
SILVER SPRING, Maryland
United States



Last Login: 7/6/2009
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Status:Single
Zodiac Sign:Gemini



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About me:
The Tuberous Sclerosis Alliance is the only national organization in the United States dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. www.tsalliance.org
Who I'd like to meet:



   Tuberous Sclerosis Alliance's Friend Space (Randomized)
Tuberous Sclerosis Alliance has 197 friends.
 † Stephanie † 


 ღ•:*¨Ƹ̵̡Ӝ̵̨̄ƷღKatღƸ̵̡Ӝ̵̨̄Ʒღ¨*:•ღ 


 *Maggie* 


 Ken D. 


 TSC Mom and proud of it!! 


 Ashley 


 To Yours In Health 


 Auntie 


 "Francine/CIA/FBI" 


 LeAnne 


 Merry! 


 Amy 





Tuberous Sclerosis Alliance's Friends Comments
Displaying 25 of 61 comments  ( View All | Add Comment )
*angie**





Jun 14 2009 6:33 PM

hola a todos me gustaria poder hablar con alguien ,mi amiga acaba de tener una bebe y tiene tuberous sclerosis y la verdad no sabemos mucho de la enfermadad ojala alguien de ustyedes nos puedad a yudar ,gracias
Missy





Jun 10 2009 6:07 PM

Hi Everyone-My son, Charlie,was diagnosed at birth with TSC. He has rhabdomyomas, AMLs, and too many tubers in his brain to count. He has tonic clonic seizures and infantile spasms. We are from Louisiana and would love to meet other TSC parents. Also, please feel free to add me as a friend.-Missy
BR3NDA





May 22 2009 6:13 PM

HI EVERYONE MY DAUGHTER PAOLA HAVE TUBEROUS SCLEROSIS. SHE DIAGNOSTIC WHEN SHE HAD 6 MONTHS, SHE HAS NOW 8 YEARS-OLD
...~tara~...





May 16 2009 6:03 PM

Hi everyone. I just wanted to give an update on my son. His surgery was a success. Both tumors were removed. We are home now. He's been sick. He ate for the first time this morning. Recovery so far has been stressful on him & myself. The neurosurgeon made an "s" shaped incision on the top of his head. I guess it takes about 1 month for the flesh to heal, & three months for the skull bone to fuse back together. I am soooo relieved the surgery is behind us!!!!! I'm very thankful for this my space page by the way.
Kiana a.k.a Nenn





May 12 2009 7:16 AM

2 year old son having complex mild seizures with lip smacking and strange giggling. Anyone experienced this? He is not on meds right now. Thanks
...~tara~...





May 11 2009 7:10 AM

Hi everyone. My son Noah's surgery is today. The neurosurgeon is going to try & remove a sega tumor in the left ventricle, & attempt removal of smaller one in the right venricle. I just wanted to put the word out & have plenty of prayers in the air. Thanks!
Purringbabe





Apr 12 2009 2:02 PM

Photobucket
rachael





Apr 10 2009 3:39 PM

Get This from CyArena.com

Send to Friends email
Purringbabe





Mar 17 2009 3:26 PM


St Patty's Day Comments
TERRI





Mar 9 2009 12:17 AM

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-------------------------------------------
..
Hey Tuberous Sclerosis Alliance,
I left you a gift. Click and pick it up.

...~tara~...





Mar 3 2009 4:50 PM

Hi everyone~ my son has TS, & he is 11 now. We just found out from a recent MRI that he has a sega giant cell tumor on the left side of his brain plus another one on the right is starting to develop. He has 8 nodules, a cluster of cysts on his right kidney, & had a heart ablation surgery 3 years ago,also all the typical skin symptoms. I really wanted to know if anyone out there can get back w/ me if you or your child has had the "sega". What was the outcome? did you/they get on "Rapamycin"? Thank you.
theresa





Feb 28 2009 9:26 PM

hi all,i have a 21 year old daught er(robin)with tsc,she had brain surgery at 5 to contrrol siezures,but they came back about 2 years ago and they were worse than before,we also have alot of behavior problems with her,i love but i have my days lol.most days shes a loving kid.mentaly shes about 14. we are having alot of trouble finding a place for her to work because theres no funding any where,where we live so she stays at home most days.i would love to talk to anyone else who has this disesase or parent.dont think ive ever talked to any body else with tsc or parent. so feel free to email me any time at hawney1111@aol.com.thanks theresa
Mesofrog





Jan 14 2009 4:37 PM

I hope All is well for this new year for all. Happy new year. Be safe and work out.
Becca





Jan 14 2009 2:42 AM

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-------------------------------------------
Think Autism.

Come join my cause: Think Autism.! You will be able to recruit friends, raise money, and add a profile badge to show your support! Join_cause_button_260x52

Lori *A PROUD TSC MOM*





Jan 12 2009 11:34 PM

hi my name is Lori and my daughter was diagnosed at 5 months with TSC and she is doing alot better now since she has been on vigabatrin and i am soo glad that everyone is working hard to get it approved and we are almost there ...YAY... but if there are any families in Virginia that wish to share info or would like info you can add me or anyone else in other states i might be young but i have learned alot about TSC and thats because its serious and i love my daughter i was devastated when i found out about her having TSC but the more i learn the more i stay focused that one day someone will help us find a cure for this rare but serious condition so keep your heads up everybody and know that your not alone and me, my daughter, and my family understands what your going through and its okay its hard but it will get better atleast thats what i pray for everyday and every night i look at my daughter and pray!!!!!!
Kiana a.k.a Nenn





Jan 6 2009 2:06 AM

Hi...anyone that is a carrier for TS thinking about having other children?
DeVine





Dec 31 2008 9:18 PM

Hello... My 17 month old was diagnosed with TSC just last month and we still have questions that maybe families currently living with this disease can answer. I am in TX and would like to connect with people dealing with TSC.
Becca





Dec 23 2008 3:38 PM



MERRY CHRISTMAS !!!
♥Chelsea♥





Dec 10 2008 11:01 PM

Hello everyone:) My son is now 16 months old and he has TSC. He was diagnosed at 10 months old...so not really that long ago. We are finally able to cope with the fact that our little guy has TSC but it wasn't easy to hear the news when we first found out! I would love to hear from other families who also have someone affected by TSC. Feel free to contact me...I know that support from others is amazing during tough times!
Kiana a.k.a Nenn





Dec 9 2008 4:23 AM

Hello...just wondering about families with multiple children where one parent has TS.
How many of your children have TS?
Professional Idiot





Dec 2 2008 11:26 PM

Hi, I would to know anyone who had kidney and lung problems, from TS.
So I can hear what you or someone you know went through.
Thanks
Kiana a.k.a Nenn





Nov 10 2008 5:22 AM

Hi everyone! New to ts myspace. I have a one year old son who just completed genetic testing for TSC diagnosis. He has multiple heart tumors but has not yet had his MRI to check anything else. Anyone had heart tumors found first and then other tumors? Add me....Thanks
chris





Nov 10 2008 3:07 AM

I have a 4 year old daughter with TS. Please add me to your friends list as my family is reaching out to other families as will deal tih TS. I look forward to meeting everyone.
Mesofrog





Oct 31 2008 2:26 PM

Happy Halloween everyone.
Mesofrog





Oct 6 2008 11:56 PM

I hope everyone is well. Have a great Tue.
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