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Jeanna Huette
fightingforlizzy@gmail.com
Monday, Aug 16, 2010
Elizabeths Page
Our Candle-lighting this year.

Lizzy will be 7 years old next month. Thank you all that helped us get here,
Sallie- I still remember the letter you sent me telling me every-thing we needed for Lizzy and why. You are one great lady and Laura the info you gave me about DR.Schroth helped save her life. You are the best. Kim McAdams- I still have a lot of the info you shared on here and still share it with others. Love ya for that. So may others to thank also. Steph, Mary..... wow and the lists goes on.
Miss this place....miss you all. You all are in my heart forever.
To many places on the internet these days to try to keep up with. I do not keep up well. Lizzy keeps me quite busy.
You are our family.




Andrea Smith
kanga1102@bellsouth.net
Saturday, Aug 14, 2010
Oops! Forgot the file!

SMA Candlelighting 2010


Andrea Smith
kanga1102@bellsouth.net
Saturday, Aug 14, 2010
SMA Candlelighting 2010

Karen
jems03@tampabay.rr.com
Tuesday, Aug 3, 2010
As we all know August is SMA Awareness month. 7 years ago I initiated the annual SMA Candlelighting which is held the 2nd Saturday of August. Please remember to light your candles in honor and memory of our precious ones. Best Wishes Always, Karen
mom to angels Eric and Jessica

Suzanne Williams
Erinnesmom@gmail.com
Sunday, Jul 25, 2010
What is Erinne Up To Now?
How many of us have heard, "Oh, you must be SO strong". Well, I don't consider myself to be exceptionally strong. I DO feel chosen to be Erinne's Mom. And then I ran across this, which gives me peace:



God doesn’t use us because of how strong we are. He uses us because of how willing we are to meet Him where He is working.

love and hugs to you all,
Suzanne, Erinne & Latte

Kim McAdams
skylerbingaling@yahoo.com
Wednesday, Jun 23, 2010
Thoughts and prayers going out today to Rex and Tine Powell on Gilly's 6th Angelversary. We just want you to know that we think of your sweet Gilly ALWAYS and keep her close to our hearts. We're so fortunate that you all live so close to us, so that we were able to get to know you and Gilly personally - to actually see and witness the true beauty of her smile, of her personality. Thank you so much for sharing her with us! We love your little girl (and the both of you!) more than you could ever know!

Miss Gilly, we love you and we miss you. Please send your Mommy and Daddy lots of soothing angel hugs and kisses today - and always - we know they miss you lots!

Lots of love,
Kim

MJ Purk
mj.purk@gmail.com
Friday, Jun 18, 2010
Hello Everyone:
My name is MJ Purk and I am a senior in college currently interning with Miracle for Madison and Friends. Miracle for Madison and Friends is an organization dedicated to finding a cure for Spinal Muscular Atrophy by supporting the efforts of researchers at the Ohio State University and Nationwide Children’s Hospital. As part of my internship work, I am conducting a questionnaire about autonomic nervous system problems related to SMA in children and adults with all types, including those who have earned their wings. This questionnaire is sponsored by Miracle for Madison and Friends but is not associated with any university, medical professional, or additional organizations It is currently undocumented whether or not individuals with SMA have autonomic nervous system dysfunctions and this questionnaire, although not scientifically based, will enable the medical profession to see what autonomic symptoms are most prevalent in individuals diagnosed with SMA. The questionnaire is ten (10) questions in length and should take no more than thirty (30) minutes to complete if you include additional information about your own or your child(ren)’s symptoms. If you have/had more than one child with SMA, please fill out the questionnaire for each of your children that you can recall in depth medical details about. The questionnaire will be available until August 8th 2010, but the sooner you can answer the questions, the better. At the end of questionnaire, I will compile the data and share it. There is a question asking for your e-mail address; please include your e-mail address if you wish to have the results e-mailed to you. Questions regarding this questionnaire can be directed to mj.purk@gmail.com. Again, results are *NOT* scientifically based but information gathered will be shared with several organizations, community support groups, and some medical professionals who have publicly expressed an interest in this topic, once the questionnaire is completed.

You can find the questionnaire at www.surveymonkey.com/s/HQLW7XK

Margaret "MJ" Purk
E-mail: mj.purk@gmail.com
Questionnaire: www.surveymonkey.com/s/HQLW7XK
Website: www.miracleformadison.org/

Helen Baldwin
jeffreyb@skybest.com
Wednesday, Jun 9, 2010
(From thesuitelifeoflucyandethel.com, a blog I do with good friend/fellow SMA mom, Cindy Schaefer):

Big news from Milverstead Publishing (publisher for The Jeffrey Journey)! Not A Fire Exit (www.notafireexit.com), founder Chris Finlan’s novel based loosely on an SMA family, is headed to the big screen (tinyurl.com/33d6d3r)! Not a shabby accomplishment for someone who hadn’t even written the book at this time last year….

And certainly not a shabby accomplishment for someone’s first book.

Milverstead’s unique beginning stemmed from a purpose. After learning that Zane, one of the twin babies of a former classmate, Hillary Dunlop Schmid, had SMA and wasn’t expected to live long, Chris went to work to see how he could help in some way. He opted to write a book, despite the fact that he hadn’t progressed much past doodling in the past. The book reached print status in an insanely short amount of time, with a generous portion of the proceeds earmarked first for Families of SMA and then the Gwendolyn Strong Foundation.

And then I came on board, begging asking nicely if Chris would be interested in taking me and The Jeffrey Journey under his impressive wings after experiencing utter frustration with my publisher at the time. Because it’s Chris’ nature to be helpful, he said yes, and life as he knew it ended. He has been such a joy to work with in all ways through the entire process of getting The Jeffrey Journey reissued, I’m eager to work with him however I can (and, no, I’m not being compensated to say that. But it’s a nice thought!).

As Milverstead’s author roster grows, so does Chris’ determination to help special causes from SMA on. His giving spirit is contagious, and I fully expect authors with a charitable nature to come flocking.

The events of the past twelve months have exciting, humbling, and overwhelming at times for Chris. Read his reflections, replete with gratitude and awe at tinyurl.com/24gmv3m.

Congratulations, Chris! You have shown what hard work, faith, tenacity, and good will can accomplish. I’m proud to be a witness to the major development for Not A Fire Exit and incredible metamorphosis of Milverstead.

Oh, and don’t forget – I’d like Meryl to take my place when The Jeffrey Journey hits the big screen.

Ahem.

Lucy*

PS – Joel Friedlander, book designer for The Jeffrey Journey, has an excellent post about Chris and his unusually quick accomplishment at tinyurl.com/299s9rg.


(*aka Helen)

Kim McAdams
oursmaprincess412@yahoo.com
Sunday, May 30, 2010
Thinking of you, your family and Miss LilyB today, Amy. We miss your girl so much. She will never, ever be forgotten - ever. Sending you and your parents oodles of really, really mushy hugs today - and always.

Miss Lily - you have THE best day EVER, celebrating in Heaven with all your super cool friends. Eat tons of cake and ice cream. I can see you now, giggling with all your girlie friends, running from cootie-infested boys, climbing trees and playing with butterflies - and other woodland creatures. I know you will take time, too, to send your Momma some tender angel hugs and kisses - because you know she misses you sooooo much. xoxoxo, Lily...we love you forever and always!

The McAdams Family

Doddie J. Slack, mom to Brian (age17) and angel Ch
cameowa@yahoo.com
Thursday, May 27, 2010
Hi, guys. I haven't been on here in quite some time. I have some great news about Brian. He has been invited to attend the National Youth Leadership Forum on National Security this fall in Washington D.C.

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