 |
 |
 |
 |
 |
 |
 |
|
|
|
|
|
|
|
Upon being diagnosed with SMA, you should get all the information that you can. These places deal with SMA specifically. Click on so you get to reliable informative sites on the internet.
Dr.Bach started out the Non Invasive Ventilator use on SMA kids with success more than 20 years ago. He still has his office at UMDNJ, and is consulted if kids are taken to PICU at University Hospital. He is in charge of the Center, and is affiliated with MDA. Dr.Bach follows up Deirdre's progress every 6 months, and as needed.
The University of Utah offers much information about SMA. This link goes specifically to a video about the respiratory care so you have an idea of what to expect from Non Invasive use of Cough Assist. We encourage you to read the whole site, though. It has all the basic information you will ever need, as well as links to clinical trials and news. DrSwoboda is very involved with SMA kids, and with Project CureSMA.
Families of SMA offers all resources for support of parents with SMA kids. They provide the right information, and create various fundraising events for the CureSMA cause
Provide all services needed by an SMA patient: pulmonologist, neurologist, physician, pediatrician, geneticist, and more. Very current about medical trials information.
Claire Altman Heine Foundation: Dedicated to Identifying Carriers of SMA
National Institute of Neurological Disorders and Stroke
National Organization Rare Disorders
I'm always around in this chat room. Very special families with responsible answers 24/7.
