# My baby girl has Spinal Muscular Atrophy (SMA) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [July 18, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126 "2010-07-18T15:17:44Z")\ **Posts on this page:** 20\ **Page:** 35
**Author:** ![The\_Weird\_One](https://avatars.discourse-cdn.com/v4/letter/t/7bcc69/32.png) [@The\_Weird\_One](https://boards.straightdope.com/u/The_Weird_One)\ **Post date:** [February 2, 2011, 7:06pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/681 "2011-02-02T19:06:44Z")
> [@Renee](#): > > May I suggest when the finals votes are needed that a new thread be started, in case anyone isn’t following this thread as closely as needed (I missed the first voting)? I bet you’d get more votes. Ditto this. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 2, 2011, 7:08pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/682 "2011-02-02T19:08:26Z")
I reported the post, asking the mods for approval. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 6, 2011, 12:47am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/683 "2011-02-06T00:47:10Z")
Here’s a friendly reminder that the Sacramento Baby Idol finals voting begins this Monday, Feb. 7, 2011. [Here are the finalists](http://www.endonline.com/pages/9034126.php). I don’t yet know exactly where the online voting page is. I will link to it asap. Get your clicking fingers ready to vote daily for my baby Getty. You need to make an account to vote. Two babies will be eliminated per day. 😉 The winner gets $1,000 (and perhaps a chance to go on the radio and spread awareness of the fight against SMA). Thanks! [P.S. - Still awaiting any word from the mods that they are even considering allowing a new thread for the contest. Thanks!] ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 6, 2011, 6:15pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/684 "2011-02-06T18:15:54Z")
The Mods approved the [Baby Idol voting thread](http://boards.straightdope.com/sdmb/showthread.php?p=13435791#post13435791). Thanks! ---
**Author:** ![Shayna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/shayna/32/17976_2.png) [@Shayna](https://boards.straightdope.com/u/Shayna)\ **Post date:** [February 6, 2011, 8:53pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/685 "2011-02-06T20:53:44Z")
**Bearflag** , have you read about this? [CALIFORNIA STEM CELL, INC. FILES IND TO COMMENCE PHASE I CLINICAL TRIAL IN SPINAL MUSCULAR ATROPHY](http://www.californiastemcell.com/cgi-bin/pressrel?20101201) IRVINE, Calif. (December 01, 2010) “California Stem Cell, Inc. (CSC) and Families of Spinal Muscular Atrophy (FSMA) announced today that CSC has filed an investigational new drug (IND) application with the US Food and Drug Administration (FDA) for approval to commence a Phase I safety study on a jointly-developed stem cell-derived motor neuron transplantation therapy for Spinal Muscular Atrophy (SMA) Type I.” . . . "CSC, a leading stem cell therapeutics company, has developed a stem cell-derived motor neuron transplantation therapy, MotorGraft™, for the treatment of SMA Type I. Pre-clinical studies completed in collaboration with the Hans Keirstead Research Group at the University of California, Irvine have shown functional benefit and safety in animal models. CSC’s MotorGraft™ was granted orphan drug status for treatment of SMA by the FDA in late 2009. Filing of this application is the first step in a multi-phase clinical development pathway aimed ultimately at approval of a novel therapy." . . . "The trial will study the safety of MotorGraft™ and the surgical procedure required to deliver these cells directly into the spinal cords of patients with SMA Type I **and will enroll a very limited number of patients**. This IND filing is a major milestone in the search for a treatment for SMA patients. " My friend with SMA3 is feeling really confident that a breakthrough cure is really close. I pray it’s in time to help little GettyOwl. Any chance of getting her enrolled in this trial? ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 6, 2011, 9:12pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/686 "2011-02-06T21:12:31Z")
Yes, I am aware of that clinical trial. My understanding of that particular clinical trial is that they are probably looking for patients in the 0-3 month old range and probably not interested in Getty (now age 10 months). Thanks for the heads up! ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 7, 2011, 4:10pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/687 "2011-02-07T16:10:46Z")
[Please vote for Getty today!](http://www.endonline.com/pages/9034126.php) Thanks! ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [February 7, 2011, 4:19pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/688 "2011-02-07T16:19:09Z")
Done! ---
**Author:** ![mhendo](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/mhendo/32/3159_2.png) [@mhendo](https://boards.straightdope.com/u/mhendo)\ **Post date:** [February 7, 2011, 4:20pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/689 "2011-02-07T16:20:11Z")
Voted. BTW, when you register in order to vote, there is a second screen that asks for your name and phone number. Each of these has an asterisk, suggesting that it’s required information, but there’s also a button you can click to skip that step. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 8, 2011, 7:38pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/690 "2011-02-08T19:38:54Z")
[http://www.endonline.com/pages/9034126.php](http://www.endonline.com/pages/9034126.php) Getty is still in. Please vote today (Tuesday). Thanks! ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 9, 2011, 8:18pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/691 "2011-02-09T20:18:54Z")
Getty has advanced to WEDNESDAY in the Baby Idol finals . Please vote WEDNESDAY for her! [Click here to vote](http://www.endonline.com/pages/9034126.php). Help raise SMA awareness! Thank you! ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 11, 2011, 12:56am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/692 "2011-02-11T00:56:09Z")
Getty has advanced to THURSDAY in the Baby Idol finals on Sacramento 107.9 The End. She has made it to the Final Four! This is so amazing and so very exciting. Please continue to vote for her and let’s get this little lady the crown and help raise SMA awareness! We would greatly appreciate it. [Click Here to Vote](http://www.endonline.com/pages/9034126.php) In other news, Getty got a specialized medical stroller today! ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [February 11, 2011, 2:05am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/693 "2011-02-11T02:05:47Z")
That’s a fancy looking stroller on Getty’s blog. I hope she likes it. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 11, 2011, 2:25am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/694 "2011-02-11T02:25:02Z")
> [@carnut](#): > > That’s a fancy looking stroller on Getty’s blog. I hope she likes it. It like $3,500 fancy. Good thing it’s covered by health insurance. It has things like recline (180 degrees flat, which is critical) seat tilt adjustable foot plate adjustable posture supports equipment tray underneath easily collapsible for travel anchor hooks to anchor it down in a van for travel right in the stroller seat belt crossing harness restraints adjustable so it expands custom to her own measurements it comes with a seating tray the connects right in front of her so she can use the tray for lateral arm movements to get strength or she can put her ipad on the tray and watch things on it. ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [February 12, 2011, 5:04am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/695 "2011-02-12T05:04:46Z")
I got my vote in just under the wire. Thank goodness for time zone differences. Fingers crossed. ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [February 12, 2011, 5:29am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/696 "2011-02-12T05:29:28Z")
That stroller sounds very well thought out. I’m glad to hear insurance kicked in on it. I keep thinking what a challenge it must be for you to keep her active and interested in learning as she cannot negotiate her own way around a room to make lots of the discoveries other babies her age might. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 12, 2011, 5:27pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/697 "2011-02-12T17:27:40Z")
Now that we have all of her basic medical equipment, we do need to turn our attention more toward age appropriate learning, massage, and physical therapy. We have an ipad and she enjoys independent movement to play digital piano. We sing and read to her daily. One of our goals is to ensure her physical limitations have minimal impact on her learning. We have nurses who visit us from the County Office of Education who are helping us with that. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [February 14, 2011, 3:51pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/698 "2011-02-14T15:51:34Z")
She won Baby Idol! w00t! Her SDMB family was a huge help. Thank you all for your support! [www.gettyowl.com](http://www.gettyowl.com) ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [February 14, 2011, 3:59pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/699 "2011-02-14T15:59:16Z")
::::does happy dance:::: ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [February 15, 2011, 2:09am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/700 "2011-02-15T02:09:51Z")
Awesome win. I’m glad to see it increased her website hits. [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=34) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=36)