Pfizer & Repligen Collaborate on SMA Therapy

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Families of Spinal Muscular Atrophy Committed $2.5 Million to Funding SMA Research in 2012

  
Families of SMA is dedicated to creating a treatment and cure for Spinal Muscular Atrophy by funding and advancing a comprehensive research program, which includes:
-Basic Research to reveal the best ways of making SMA drugs,
-Drug Discovery to make practical new drugs, and
-Clinical Trial resources to help test new drugs. Families of SMA committed new funding to the following research during 2012:
-$710,000 for Basic Research.
-$1,450,000 for Drug Discovery.
-$110,000 for Clinical Trial Resources.
-$200,000 for the 16th SMA Research Group Meeting. 

Research funding was provided to the following institutions: Northwestern University; Johns Hopkins University School of Medicine; University of Southern California; University of Ottawa; Indiana University; Nationwide Children's Hospital; CALIBR; The SMA Patient Registry; Ohio State University. Click here to see the details of the awards.    The 2013 Annual Campaign has now raised over $400,000 for SMA research and support. 
80% towards our initial goal of half a million!

There's a NEW Facebook group for SMA Support

Please visit
http://www.facebook.com/groups/386426768116105/
if you are affected by SMA in ANY way,;whether a family member, therapist, doctor, etc... YOU ARE WELCOME TO JOIN!
The more minds we put together, the better!

August is SMA AWARENESS MONTH 

FSMA has started doing the 2nd Saturday of August as candle light night. So just wherever you are you can light a candle in memory of and honor of all those with SMA. You can get groups together too if you want. Some people have events for this

EVERYONE, help Madison Reed win a chance to meet boy band "Big Time Rush!" Madison is 15 years old living with Type 1, SMA...let's help her WIN THIS! All you 
have to do is click below!
THATS IT!

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.kisscleveland.com%2Fpages%2Fcontests%2Fmeet-big-time-rush%2Findex.php%3Fid%3D991498&h=cAQEpUbIO

Philips Respironics has a new accessory to the Trilogy ventilator: "Oximetry Interface Kit"

Description of the Trilogy Oximetry Interface Kit

The Philips Respironics Trilogy Series Ventilators with the Masimo Oximetry Module - the

Trilogy Oximetry Interface Kit can be used with the Masimo Oximetry Module and the

Respironics Trilogy Ventilators (listed below) to measure fuinctional oxygen saturation of

arterial hemoglobin (%SpO2) and pulse rate for adult and pediatric patients. The Trilogy

Oximetry Interface kit may be used in a home, institution and/or hospital environment.

Compatibility

The Trilogy Oximetry Interface kit is compatible with the following Philips Respironics
Trilogy ventilators:
* Trilogy ]00, 200, o2, 202

1075383
Masimo high performance/low power
pulse oximeter
1080964
Trilogy oximetry interface kit: interface
adapter, SD card and mailer carrying case

Closer to a cure
with every moment. When you sign up for a 20 minute mini photo session with one of our talented photographers, you not only capture a precious family moment. You bring kids with spinal muscular atrophy that much closer to a cure.

The NEW cough assist machine is here!

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The new, smaller cough assist machine is finally here by Philips Respironics. Check it out:
http://coughassiste70.respironics.com/

Remember the "E70" is the overseas version..
if you are in the United States you need to request a prescription from you doctor       
for the version called "T 70"

Click below to check and make sure your Trilogy Vent is not one that has a recall.

Remember the Candle lighting on the 2nd Saturday - August 11th, at sunset.

Phase 2 ISIS Study enrollment
Begins in October 2012


Dr Susan Iannaccone says:
We expect to begin enrollment for Phase 2 ISIS study by early October.  Shanda is the research coordinator for the study.
214-730-5437

BrAVERY Run, August 18th

from the Canahuati family

There is also the brAvery run on August 18th in Fredricksburg, TX...

http://braveryrun.blogspot.com/ 

A Day for AVERY

On August 13th at 7:05 PM,  the Sugar Land Skeeters will be honoring Avery with “A Day for Avery” at the ballpark and will be crossing a few more items off of her Bucket List.


The Skeeters will be wearing special jerseys in honor of Avery and ask everyone wears purple that night to “Purple Out” the stadium. In addition, the players will be wearing special jerseys in Avery's memory for a post-game jersey auction and they will be giving out special STRIKE OUT SMA bracelets to the first 2000 people at the gates.  Fans will also have the opportunity to participate in the world’s longest first pitch where donations can be made to go down onto the field along with other special surprises.  which will benefit Dr. Kaspar's Gene Therapy program for a cure through Sophia's Cure Foundation.

https://www.ticketreturn.com/prod2/Buy.asp?EventID=76490&promocode=AVERY2012