Stop SMA

Stop SMA www.stopsma.org Spinal Muscular Atrophy (SMA) is the #1 genetic killer of children under 2 years of

Permanently closed.
07/10/2017

Walter, SMA type 2, climbed onto the couch for the first time today!! We are amazed at his strength. He's also 19 months old today.

05/07/2017

Walter is almost 17 months old and diagnosed with SMA type 2. Yet here he is walking up our wheelchair ramp thanks to being treated by Spinraza his entire life. Dee Finch Horton Jeff Horton

04/17/2017

Happy Easter! 🐇🐰

03/08/2017

This is Walter, 15 months old, and he has SMA type 2. He has been receiving Spinraza since 3 weeks old, and look at him GO! He is showing no signs of SMA....no symptoms at all. What an answer to prayer! Praise the LORD! Look how thrilled his brother and sister are!

02/05/2017

Walter (SMA type 2) and Evie (SMA type 2); Walter has been on Spinraza since he was 3 weeks old.

01/17/2017

We are thrilled about all the wonderful things happening with Spinal Muscular Atrophy!

Biogen presented new data from the Phase 3 ENDEAR study of SPINRAZA™ (nusinersen), which demonstrated a statistically significant reduction in the risk of death or permanent ventilation in SPINRAZA-treated infants with spinal muscular atrophy (SMA), compared to untreated infants. The data was presen...

It's safe to say Stephen Clark's Christmas gift came early this year - and we couldn't be happier for him!DETAILS: bit.l...
12/28/2016

It's safe to say Stephen Clark's Christmas gift came early this year - and we couldn't be happier for him!

DETAILS: bit.ly/2im5W7Z

The FDA has approved the first drug to treat the devastating genetic disease Spinal Muscular Atrophy.

12/24/2016

Today, the SMA community achieved a goal that would not have been possible without the support and dedication of the families, physicians and researchers who have passionately pursued a treatment for Spinal Muscular Atrophy (SMA). We are proud to announce that SPINRAZA™ (nusinersen) has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of SMA in pediatric and adult patients.

http://www.curesma.org/news/biogen-statement-spinraza-approval.html

Today, the SMA community achieved a goal that would not have been possible without the support and dedication of the families, physicians and researchers who have passionately pursued a treatment for Spinal Muscular Atrophy (SMA). We are proud to announce that SPINRAZA™ (nusinersen) has been approve...

Big News!!!  First ever FDA approved treatment for SMA! I don't even know how to thank everybody who worked on supportin...
12/23/2016

Big News!!! First ever FDA approved treatment for SMA! I don't even know how to thank everybody who worked on supporting SMA research over the years for our family. Your support paid off!!!
http://www.curesma.org/news/spinraza-approved.html

Today, the FDA announced that it has approved SpinrazaTM (nusinersen) to treat spinal muscular atrophy, making it the first-ever FDA-approved therapy for SMA.

We want to thank our local theater group, Campanile Productions, for the opportunity they gave Evie to play Beth, one of...
12/17/2016

We want to thank our local theater group, Campanile Productions, for the opportunity they gave Evie to play Beth, one of the lead roles in "The Best Christmas Pageant Ever." They looked past her wheelchair and the things she cannot do and allowed her to show what she CAN do. She had a blast!!!

Merry Christmas!! 🎄

Review of “The Best Christmas Pageant Ever”
by Brian Coatney

Campanile Productions once again has given to the community a marvelous production at the historic Alhambra Theater in downtown Hopkinsville, KY. A cast of grade school children ushered in the Christmas season with an hour Gospel drama quite different from stereotypical nativity plays with Christmas hymns. We all love familiar traditions and rituals, and there is nothing wrong with that—unless they turn tired and sterile. About the time we start to do that, God often sends a jolt to shake things up and keep His message fresh. “The Best Christmas Pageant Ever” accomplishes that, unless the audience per chance is asleep. That is unlikely however, since the performance is delightfully raucous and humorous, with heartrending sincerity.

The pageant commences with the Bradley family, and Bob, the dad, is in a bit of a yawn about the pageant. Russ Guffey plays a believable Bob, while maintaining an air of both eccentricity and normalcy. He is a good foil, even comedic himself, for the other three family members, all of whom are quite lively. Jake Horton plays a peppery Charlie, who nonetheless gets his lunch stolen all too often by intimidating Leroy Herdman (Eli Morris). Charlie (Jake Horton), lacking brawn, diverts Leroy’s attention to the fact of snacks at church, and thus the six Herdman kids come crashing onto the Sunday school scene.

As they do, annual pageant director Helen Armstrong (Chrissie Johnson) has broken her leg of all things, and Grace Bradley is sort of conscripted. Jennifer Moorefield plays a Grace who doesn’t wilt or get weepy over the prospect of the pageant going up in flames. Rather, she bucks up in a determined way and heads into recruiting the children for the key roles in the nativity play.

By this time, however, the Herdman kids have quietly strong-armed the usual volunteers, and suddenly Grace has to deal with a cast of key players she had not prepared for. She does a great job, and might even be called the glue of the whole thing, showing incredible patience and versatility as her name, Grace, starts to be a quality that permeates the chaotic and entertaining rest of the story. She shows how to “make it up as you go along” in what we might call the Holy Spirit’s leading.

What a strange ensemble now appears as we see a wild and “not a clue” Mary, mother of Jesus. This is Imogene, played at top energy by Ellie Groves without any pretense of smoothness—quite the opposite of Alice (Chaney Guffey) who had previously been Mary and was much more the well-mannered and polished, mannerly version of Mary. Imogene, in contrast, is so unpredictable and rough, that Mrs. McCarthy (Emily Mayfield) dare not volunteer her baby for the part of Jesus. Instead, the pageant has to resort to a doll baby that gets slung around like baton at times.

Joseph can’t help calm things down either because of course he’s a Herdman, played spunkily by Andrew Riggs. On top of that, the angel of the Lord is a wild, firecracker little girl, Gladys Herdman, played with hysterical comedy by Rebecca Ward. Her loud, cracking pronouncements come out with great humor and endearment, and she makes sure that the angel of the Lord won’t be a pasty, weak character in this salvation drama.

As we watch Grace turn into gold every new threatening moment to the message and continuity of the pageant, another character also keeps the production moving along with sage and witty commentary. This is Beth Bradley, played superbly by Evie Horton. It’s hard to imagine a better Beth on stage. She is the epitome of poise and innocence, while conveying adult-like commentary. Her charm is totally winsome.

As the nativity story takes place, a succession of child vocalists delivers uplifting stanzas from classic, inspirational hymns. Add in the wise men (Herdmans again of course, played by Eli Morris, Matthew Couch, and Barnett Davis)) bringing the ham from their family food basket as a present to Baby Jesus, and the climax of the pageant becomes not only the story of Jesus, but the story of those to whom He came—those who didn’t know the story at the time because they were watching it happen for the first time in history.

This is a good reminder that Jesus came to “just as I am” people, not to who they would become. Ya gotta start somewhere, and the somewhere can be the least expected.

Thanks to director Jeff Riggs for staging this a second year, and it has the message and energy to hold up for many more years hopefully. Thanks also to the talented Ozburn family for their amazing contributions to directing, vocal instruction, and designing of sets and costumes. And then how can a production go on without sound and lighting, so thanks to Matt Robinson, Sherry Riggs, and Butch Hardison.

Thanks as well to God for sending His son into the world to save us. The pageant reminds us of that, and gets the month of December off to an inspiring start.

11/19/2016

Biogen and Ionis Pharmaceuticals announced that SPINRAZA (nusinersen), an investigational treatment for spinal muscular atrophy (SMA), met the primary endpoint at the interim analysis of CHERISH, the Phase 3 study evaluating SPINRAZA in later-onset (consistent with Type 2) SMA. The analysis found th...

Address

Flowood, MS

Alerts

Be the first to know and let us send you an email when Stop SMA posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Share