Latest Activity

Francesca is now a member of SMAspace
Tuesday
Annie Ford liked Lisa Oltmans's blog post An OCD Mom’s Caregiver Guideline for Hospital Stays
Nov 15
Annie Ford is now a member of SMAspace
Nov 15
Heather Bedenbaugh replied to MJ & Brenda of B4SMA's discussion Autonomic Nervous Symptoms in SMA Questionnaire
"Hi I have a daughter with SMA 3 and since she has received the flu shots with the H1N1 strain she has experienced horrible autonomic nervous dysfunction symptoms. Currently our biggest concern is her circulation. Her feet turn purple much more…"
Nov 13
tj bennett posted a status
"The Race to Yes Have you emailed Commissioner Hamburg yet? http://tinyurl.com/ounl7wh everyone should help them..."
Nov 10
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Arms for Asher - Fighting SMA Together Today was a powerful day. An unexpected powerful day. It was Asher's 5th injection for a trial drug that is proving to benefit SMA babies. This drug is not a cure, but it is an effective treatment. It is…"
Nov 1
beth gatto is now a member of SMAspace
Oct 24
Laurie Brooks liked Lilah's photo
Oct 23
Lilah posted photos
Oct 20
Lilah is now a member of SMAspace
Oct 20
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

Forum

Autonomic Nervous Symptoms in SMA Questionnaire

Started by MJ & Brenda of B4SMA in Research. Last reply by Heather Bedenbaugh Nov 13. 7 Replies

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

Started by Jen (Boro) Peters in Other. Last reply by tj bennett Nov 1. 98 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.

 
 
 

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