Comments for Spinal Muscular Atrophy | FightSMA http://www.fightsma.org Sat, 18 Feb 2012 09:52:47 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Isis Initiates Phase 1 SMA Clinical Study by Terri Cox http://www.fightsma.org/blog/spinal-muscular-atrophy-news-stories/isis-initiates-phase-1-sma-clinical-study/comment-page-1/#comment-23035 Terri Cox Sat, 18 Feb 2012 09:52:47 +0000 http://www.fightsma.org/?p=2553#comment-23035 Please add me to your email list and include me on any conference information and how to go about getting into a trial. My five month old grand daughter was diagnosed with SMA Type 1 last week. I am a formed CME project manager for oncology programs all over the USA. I worked with live programs, online self paced and live programs, podcasts, reading materials and phone conferences. We are personally effected by this terribl disease, as it has hit my grand daughter, Leila. I’m desperate for anything we can do to not only save her, but help with research to help other children and families from expiriencing this intolerably, cruel, disease. She’s been mis-diagnosed for the issues she’s had for months, only because many good pediatricians think it’s just small, common issues. She was diagnosed with rreflux (on 3 RX’s), allergies to milk and formulas (been switched from breast milk to several formilas and eventually asked to add rice cereal to every bottle), and are putting these babies in physical thereapy to teach them to hold their heads up. Our precious Leila Grace has been in physical therapy for three months before being dsent to a nuerologist. Her health just looked like several small common issues. We want to help. Please tell me how? She is currently on one reflux medication. Thank you, Terri Cox 8175427223 terri@f1it.com Please add me to your email list and include me on any conference information and how to go about getting into a trial. My five month old grand daughter was diagnosed with SMA Type 1 last week. I am a formed CME project manager for oncology programs all over the USA. I worked with live programs, online self paced and live programs, podcasts, reading materials and phone conferences. We are personally effected by this terribl disease, as it has hit my grand daughter, Leila. I’m desperate for anything we can do to not only save her, but help with research to help other children and families from expiriencing this intolerably, cruel, disease. She’s been mis-diagnosed for the issues she’s had for months, only because many good pediatricians think it’s just small, common issues. She was diagnosed with rreflux (on 3 RX’s), allergies to milk and formulas (been switched from breast milk to several formilas and eventually asked to add rice cereal to every bottle), and are putting these babies in physical thereapy to teach them to hold their heads up. Our precious Leila Grace has been in physical therapy for three months before being dsent to a nuerologist. Her health just looked like several small common issues. We want to help. Please tell me how? She is currently on one reflux medication.
Thank you,
Terri Cox
8175427223
terri@f1it.com

]]> Comment on FightSMA Featured Family: Jasmine Rankin by Lauren moore http://www.fightsma.org/blog/fightsma-featured-families/fightsma-featured-family-jasmine-rankin/comment-page-1/#comment-22381 Lauren moore Sat, 11 Feb 2012 10:37:23 +0000 http://www.fightsma.org/?p=2623#comment-22381 I look up to you jas, you inspire me and made me the person I am today! Your so brave and I love you so much <3 I look up to you jas, you inspire me and made me the person I am today! Your so brave and I love you so much <3

]]> Comment on FightSMA Featured Family: Jasmine Rankin by Amber Shore-Marston http://www.fightsma.org/blog/fightsma-featured-families/fightsma-featured-family-jasmine-rankin/comment-page-1/#comment-22242 Amber Shore-Marston Thu, 09 Feb 2012 19:46:47 +0000 http://www.fightsma.org/?p=2623#comment-22242 :D Hi jazzy, just a quick message to anyone that reads this, jasmine is the most amazing girl i know, she is so unbelievably brave and strong and i can't wait to meet her for the first time :D see you soon jaz keep fighting and your dad is so much cooler then mine -.- :D Hi jazzy, just a quick message to anyone that reads this, jasmine is the most amazing girl i know, she is so unbelievably brave and strong and i can’t wait to meet her for the first time :D see you soon jaz keep fighting and your dad is so much cooler then mine -.-

]]> Comment on Isis Initiates Phase 1 SMA Clinical Study by subin kurian http://www.fightsma.org/blog/spinal-muscular-atrophy-news-stories/isis-initiates-phase-1-sma-clinical-study/comment-page-1/#comment-21348 subin kurian Mon, 30 Jan 2012 03:24:21 +0000 http://www.fightsma.org/?p=2553#comment-21348 SMA WHAT TREATMENT OR WHAT MEDICININE? SMA WHAT TREATMENT OR WHAT MEDICININE?

]]> Comment on Meet New FightSMA Executive Director Ron Imbach by subin kurian http://www.fightsma.org/blog/sma-families/meet-new-fightsma-executive-director-ron-imbach/comment-page-1/#comment-21346 subin kurian Mon, 30 Jan 2012 03:02:23 +0000 http://www.fightsma.org/?p=2572#comment-21346 sir,my name is subin kurian from india.i am spinal musculr athrophya patiend.not treatment in india.my left side musless is week.right side is perfect me.i worryed in my life.what condiction in futare.this cause any medicine in world?please give me medicine sir,my name is subin kurian from india.i am spinal musculr athrophya patiend.not treatment in india.my left side musless is week.right side is perfect me.i worryed in my life.what condiction in futare.this cause any medicine in world?please give me medicine

]]> Comment on 2011: A ‘Breakthrough Year’ for SMA Research by Mary Flaherty http://www.fightsma.org/blog/spinal-muscular-atrophy-news-stories/2011-a-breakthrough-year-for-sma-research/comment-page-1/#comment-12651 Mary Flaherty Mon, 17 Oct 2011 13:25:45 +0000 http://www.fightsma.org/?p=2401#comment-12651 My 34 year old daughter has just been diagnosed with SMA type III - is any reserach currently being done that will help her? My 34 year old daughter has just been diagnosed with SMA type III – is any reserach currently being done that will help her?

]]> Comment on 2011: A ‘Breakthrough Year’ for SMA Research by Dale Taylor http://www.fightsma.org/blog/spinal-muscular-atrophy-news-stories/2011-a-breakthrough-year-for-sma-research/comment-page-1/#comment-8078 Dale Taylor Sun, 07 Aug 2011 21:04:07 +0000 http://www.fightsma.org/?p=2401#comment-8078 How does Prolactin get administered in the trials? Thank you. How does Prolactin get administered in the trials? Thank you.

]]> Comment on Inspiration from Jake and Allie: A Story of Two Very Special Fighter Kids by Ken Brenner http://www.fightsma.org/blog/fightermom-news/inspiration-from-jake-and-allie-a-story-of-two-very-special-fighter-kids/comment-page-1/#comment-5644 Ken Brenner Tue, 05 Jul 2011 17:35:25 +0000 http://www.fightsma.org/?p=2231#comment-5644 Jake, you are an amazing boy, a fantastic son and a very special person. Allie is very lucky to have you as her brother. We are very proud of you. Mom and Dad Jake, you are an amazing boy, a fantastic son and a very special person. Allie is very lucky to have you as her brother. We are very proud of you.

Mom and Dad

]]> Comment on Inspiration from Jake and Allie: A Story of Two Very Special Fighter Kids by Gina Parisi http://www.fightsma.org/blog/fightermom-news/inspiration-from-jake-and-allie-a-story-of-two-very-special-fighter-kids/comment-page-1/#comment-5594 Gina Parisi Mon, 04 Jul 2011 02:55:19 +0000 http://www.fightsma.org/?p=2231#comment-5594 Jake- I am SOOO proud of you- keep up this great work!!!! One person CAN truly make a difference, Look at all of these wonderful comments from grateful people!!! You have done amazing work!! *HUG* Mrs. parisi Jake- I am SOOO proud of you- keep up this great work!!!! One person CAN truly make a difference, Look at all of these wonderful comments from grateful people!!! You have done amazing work!! *HUG* Mrs. parisi

]]> Comment on Inspiration from Jake and Allie: A Story of Two Very Special Fighter Kids by Ritu and Ritesh Sehgal http://www.fightsma.org/blog/fightermom-news/inspiration-from-jake-and-allie-a-story-of-two-very-special-fighter-kids/comment-page-1/#comment-5500 Ritu and Ritesh Sehgal Thu, 30 Jun 2011 15:33:47 +0000 http://www.fightsma.org/?p=2231#comment-5500 HI Jake, we have a 3 yr old girl Kavya with sma type 1. We live in New Delhi, India. What you have done is truly amazing and praiseworthy. God bless you and your family. It means a lot to every parent with an sma child. Keep up the good work!! HI Jake, we have a 3 yr old girl Kavya with sma type 1. We live in New Delhi, India. What you have done is truly amazing and praiseworthy. God bless you and your family. It means a lot to every parent with an sma child.

Keep up the good work!!

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