"I have around 20 packs of chux up for grabs. If you'd like them all I ask is that you cover the shipping. Email me @ curesma4emma@gmail.com."
SMAspace
helping us help each other
Latest Activity
Brandy D Shifflett (Emma's Mom) commented on Tina MacIntyre's group Equipment Closet"I have several suction wands without vent and suction tubing if anyone needs any. Just email @curesma4emma@gmail.com."
Brandy D Shifflett (Emma's Mom) commented on Tina MacIntyre's group Equipment Closet"I have a medium Tumble Forms Feeder Seat for sale if anyone needs one. Contact me at curesma4emma@gmail.com if you're interested."
Don replied to Diana Helfrich's discussion Manual wheelchair recommendations? in the group SMA Type II"We used the Panthera Micro, check it out here:
You can pick it up with one finger it's so light, and the wheels pop off for easy transport. Note that it's intended only for indoor use. Our little guy loved it, took off the minute he sat in…"
Diana Helfrich added a discussion to the group SMA Type II
Looking for a manual wheelchair
We are exploring our options for a manual wheelchair for my 23 month old daughter. Does anyone have any suggestions or recommendations? See More
Jennifer Petzke left a comment for Jamie"Jamie,
I found out a few more things about the power Dani that you might want to know about.
1 Insurance usually only covers one "power" piece of equipment every five years. If you get the powered Dani covered then they most…"
Alexandria Darce(: posted a status"2 more days of school!!(: i can't wait !! summer here i ..COME(: camp is in july!!cant wait"
Sarah posted a discussionSMA video
Hi everyone,I am working on a video for SMA awareness showing daily life with our children. I want to tell the story of SMA, portray how we as parents, give our children the best life possible. It will also include research information and a donation link to www.the200forsma.com. If you are interested in participating, and have great photo or video to share, please email to:ourSMAway@gmail.comIn order to tell the full story, please send1 pregnancy…See More
Sarah ~ Brielle and Brooke's mom joined Bill Strong's group
Gwendolyn Strong Foundation
The Gwendolyn Strong Foundation (GSF), a nonprofit public charity, seeks to raise awareness of and fund research for SMA, the leading genetic killer of young children, and support those impacted by SMA and other life-altering diseases.
Sally Bittner Bonn joined Karen Shiesley's group
SMA Families & Friends in New York
Would like to get together with other families to share concerns and be able to just spend time.
Jennifer Goodson posted a discussionLooking for a reference on a Nurse from Maryland
Wondering if anyone knows a nurse by the name of Neema Smith. Supposedly she is transferring to Charlotte from Maryland and has taken care of an SMA child before. Just trying to check for a reference. I don't exactly trust this nursing agency...they are under contract with the school system and don't care about sending me a good nurse, just a warm body fulfills their commitment to the school system.See More
Lisa Oltmans left a comment for Amanda Booth"Hi Amanda. We used Wings Briefs and ordered from medsupplyco.com Here's a link for their small size. Our insurance and state did not cover briefs, so this was about the cheapest price I found. …"
Links
SMA Surveys/Studies:
- Dr. Bach's Cardiac and Pulmonary Complications in SMA study
- Nutrition Survey
- Reproductive Decision Making Survey
SMA Organizations:
- FightSMA
- The Gwendolyn Strong Foundation
- Eminnea, Inc.
- Families of SMA
- SMA Coalition
- SMASupport
- SMA Medical Supply
- CAHF
- B4SMA
- MDA Clinics
- Stop SMA
- Hope and Light Foundation
- SMA Angels Charity
- Kyle and Friends
- SMAespanol
- Sophia's Cure Foundation
- Cole's Quilts
- Miracle For Madison & Friends
- SMA Registrey
- InsideSMA
- Candles for SMA
- Hope for SMA
- Couture to Cure SMA
SMA Education:
- Dr. John Bach
- SMA Breathing Basics Brochure
- Consensus Statement for Standard of Care in SMA
- Family Guide to Consensus Statement
- SMA Education Day
- SMA sites tagged in Delicious.com
- Mobile and Backup Power Options
Other Helpful Links:
Birthdays
Birthdays Today
Birthdays Tomorrow
Groups
Forum
Looking for a reference on a Nurse from Maryland
Started by Jennifer Goodson in General May 16. 0 Replies 0 Likes
SMA Testing
Started by Nate Lee in Newly Diagnosed. Last reply by Nate Lee May 14. 2 Replies 0 Likes
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