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The Jeffrey Journey
by Helen Baldwin
GO HERE FOR ORDERING INFO!!!
SMA Families
Visit the Blog - The Suite Life of Lucy and Ethel*
(*Click on the 'SMA' tab at the top to see a current listing of SMA families' blogs and web sites)
Cindy Schaefer (fellow SMA mom/alias Ethel) and I have entered the world of blogging! While we're far from experts on the technical end of things and may never stop fine-tuning, we are excited about our ideas for this venture... and greatly relieved that there are two of us trying to figure things out.
One common feature of a blog is a list of favorite sites. Needless to say, we quickly included the major SMA organizations, but the list hardly stops with the so-called big boys. We know that many of you have somehow managed to find adequate time and sanity to create your own blogs or websites, and we want to share those, too.
SO... the page of your blogs and web sites, listed on our blog under SMA, is for you!
If you would like your site to be included here and on the blog, please send the link and how you would like it listed (name of blog/site, family, or name of person with SMA) to my email or Facebook, and it will be added to the SMA Families section. If the link changes or you decide at any point you'd like it listed under a different name, just let me know. If you have more than one site, feel free to send them all. I won't have much time to make sure the links are all working, so please check your own from time to time and holler if something's not quite right. Thanks!
PS - Don't forget the Special Dedication!
SMA Families
(Also listed on the blog, The Suite Life of Lucy and Ethel under 'SMA')
Text/Web Page Translation
Google Translate / Yahoo! Babel Fish
Addison Grace (CarePage)
Aul's Web Site
Autumn Persinger
Autumn (CaringBridge)
...Bahamas, Bahamas, Bahamas...
(Kyle and Lauren)
(also Byrds for a Cure)
Beasley-Wright Family Blog
Through Eli's Eyes
(angel Eli)
Bipap and Masks - Care for SMA Infants
(Tips from Bethan Edwards' parents)
Byrds for a Cure
(also ...Bahamas, Bahamas, Bahamas...)
CariKelleyTravels
(Cari's daughter, Jacquie, has SMA)
Courtney Brooke Rosas
www.our-sma-angels.com/courtneybrooke
(The) Daily Dakin
(Dakin Lovelace, SMARD1)
Deirdre Medina (web site)
Deirdre Medina - A Little Mage in the Family (blog)
Elizabeth (Lizzy) Hallam
Fighting for Lizzy
Elva Björg Egilsdóttir (Icelandic)
Emily Updates
Hope for Emily Jewelry
Emma Grace Shifflett (CaringBridge)
Emma Grace's Website
Francisco R. Rodriguez, Jr. (C.J.'s Pond)
GoodenTree
(Nora)
I hate stairs
(Blake Watson)
Icerazer Studios (Nathan Herman)
Insurance 101
(Andrea Smith - medical insurance issues/letters of medical necessity/appeals for SMA families)
Isabel Campos (CaringBridge)
Jakob Oliver Mastin: Ollie's Tale
Jenn Malatesta
(she's a mom with 2 kids and still manages occasional conversations of an adult nature!)
(The) Jocelyn Paige Lee Foundation
Julie desde el ático
Julie's Attic
Julio Chojeda Torres
Julio Chojeda Torres - Y La Atrofia Muscular Espinal
(would love to communicate with other Skype users!)
Jumaana Ibrahima (The Silver Pearl)
Karen Wheeler's Watercolor Art Works
KarenWheelerArt (Etsy)
Kaydence
Angel Wings Awareness Quilt
Larkie Lu Bows
(Larkin)
Lil' Mack (CaringBridge)
Living in Paradise
(Austin Michael Elliott)
Living to Die
(angel Jacobsen and Hodges)
Lucy Zahn (Caring Bridge)
Lucy's Hope for a Cure
Malorie Fox
Malorie Fox/CaringBridge
Miracle For Madison & Friends
(SMA Awareness wristbands, pins and car magnets for sale!)
Miracle for Mary (blog)
Miracle for Mary (web site)
Misty
Free Wheelin' (blog)
Misty's Makeup Reviews (blog)
Silver Mist Studios (handcrafted jewelry)
MJ Purk/Our SMA Angels
MJ Purk/CaringBridge
MJ Purk/B4SMA
MJ Purk/shop
Multiply Life By the Power of Three
(Nicholas Gustafson)
(The) O'Neill Family Website
(The) O'Neill Boys' Blog
Our Biggest Blessing
(Micah Paul Marshall)
Rabiya Ibrahima (The Princess, Miss Precious)
Seasons
(Connor DeLuca)
SMA - #1 Baby Killer... Joshua's Journey
Sophia's Cure
Ride For Sophia's Cure
Stacy Zoern/I Like to Run Too (book)
39 Pounds of Love (DVD)
(Ami Ankilewitz)
What's Up With Erinne???
(The adventures of Erinne & her Service Dog, Latte)
Please sign the online petition to urge Congressional support for the SMA Treatment Acceleration Act!