Latest Activity

Laurie Brooks liked Lilah's photo
21 hours ago
Lilah posted photos
Monday
Lilah is now a member of SMAspace
Monday
Lisa Oltmans liked Brad (Shira SMA Type 1 Age 8)'s video
Oct 10
Lisa Oltmans left a comment for Chaya
"Welcome Chaya"
Oct 10
Lisa Oltmans left a comment for Meredith Bugenske
"Welcome Meredith."
Oct 10
Lisa Oltmans left a comment for Walid Halik
"Welcome Walid. "
Oct 10
Lisa Oltmans left a comment for Kristen Aleman
"Welcome Kristen. A lot of members are primarily on Facebook now, but some of us still watch for questions and try to help as we can."
Oct 10
Lisa Oltmans posted a blog post

An OCD Mom’s Caregiver Guideline for Hospital Stays

It's starting - that season when germs have a heyday.  I hope that everyone is healthy and staying home this cold and flu season.  If circumstances work out that you must take your loved one to the hospital, be prepared with a bag of survival items ready to go at a moments notice. I compiled this list over the 22 years that I cared for my son, Shane.  SMA type I can put you in the hospital a lot.  It’s surprising how many times people told me, “now you can rest.” Ha – they had no idea!  Being…See More
Oct 10
Walid Halik is now a member of SMAspace
Oct 9
Lisa Oltmans posted a blog post

Secret Supplies - Prepper at Heart

SMA Moms / Dads / Caregivers,     It never hurts to stock away some medical supplies. Insurance companies and medical supply companies frown upon this, so my practice was to build my own secret stock. The best way to accomplish this stock pile was to get a plastic storage container.  When I was sole caregiver, for every supply I used, I put one into the storage container.  Using this method, I built up a 3 to 6 month supply of these critical supplies.  Then I hid that container, so I was…See More
Oct 9
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"AveXis Announces the Completion of Dosing of the Low Dose Cohort in US Clinical Trial for Spinal Muscular Atrophy  Dallas, TX, October 08, 2014 --(PR.com)-- AveXis, Inc., a clinic-stage gene therapy company, today announced the completion…"
Oct 8
Christie Oxley is now a member of SMAspace
Oct 4
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"AveXis Receives Orphan Drug Status from the US Food and Drug Administration (FDA) for chariSMA for the Treatment of Spinal Muscular Atrophy Dallas – October 2, 2014 – AveXis Inc., a synthetic biology platform company primarily focused on…"
Oct 3
Kristen Aleman is now a member of SMAspace
Sep 25
Profile IconMeredith Bugenske and Chaya joined SMAspace
Sep 24
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Who pays? How @ all the foundations for starters?   Published on Sep 3, 2014Kate is currently involved in a ground-breaking clinical trial. Her family credits the trial for giving Kate increased muscle strength and the ability to climb stairs…"
Sep 23
Lisa Oltmans liked Ashley's photo
Sep 22
Lisa Oltmans replied to Katie's discussion Awaiting Diagnosis
"Hi Katie,  I'm late responding to your inquiry. I am not sure if you've gotten an answer from your doctor yet.  While physicians and the medical world separate kids with SMA into groups, in reality each case is…"
Sep 16
Profile IconAndris Dindzans, Martins Zigurs, Good Samaritan and 1 more joined SMAspace
Sep 9

Forum

HOW CLOSE ARE WE TO A TREATMENT OR CURE???/

Started by Jen (Boro) Peters in Other. Last reply by tj bennett Oct 8. 97 Replies

Awaiting Diagnosis

Started by Katie in Other. Last reply by Lisa Oltmans Sep 16. 1 Reply

SMA Links

The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA.  Please visit this link to see the latest list of resources available to the SMA community.

 
 
 

Top Content 

1 248

248

2 165

165

Members

Photos

Loading…
  • Add Photos
  • View All

Videos

  • Add Videos
  • View All

Badge

Loading…

Where are we?

Locations of visitors to this page

© 2014   Created by Nate Lee.

Badges  |  Report an Issue  |  Terms of Service