Andrew Glenn Butler was diagnosed with Spinal Muscular Atrophy, Type I, in March 2009. His battle with SMA ended on June 4, 2009, when he was just 20 weeks old. However, our fight for a cure for this insidious disease continues. Together, Andy’s family and friends are committed to sharing his story and spreading the word about SMA.
SMA News
On Saturday, October 23, 2010, Andy’s Army will walk together at the FSMA Greater Florida Chapter’s Second Annual Walk-n-Roll in memory of Andy Butler and in support of a cure for Spinal Muscular Atrophy (SMA). Our goal is for our team to exceed 50 members.
If you can’t make it there to walk with us, you can donate to support our cause through this secure website: http://www.fsma.org/LWC/AndysArmy
The sponsored walk-a-thon will take place at Ft. Desoto Park (Shelter 14, 3500 Pinellas Bayway, South Tierra Verde, FL 33715-2528) from 9:00 a.m. to 1:00 p.m.
While Andy’s battle with SMA ended when he was just 20 weeks old, we refuse to let SMA win this war. Through the walk-a-thon and other fundraisers, we are continuing Andy’s fight against this devastating disease, which is the number one genetic killer of infants.
Thank you for being part of our fight against SMA! We look forward to marching beside you in October.
–The Butler Family
August 28th, 2010 | Posted in News, SMA News | No Comments »
This poem was written in Andy’s memory by his Nana, based on the well-known dragonfly story. A beautiful poem for a beautiful boy, who always sends us dragonflies to let us know he’s near.
A bug beneath a pond one day
Saw his friends go far away
Up along a stem they climbed
Leaving everyone behind
Then one day up that stem he climbed
Above the water he did find
A world of colour and of light
That sparkled in the bright sunlight
He fell asleep, then woke to find
His body changed, but not his mind
Wings had grown and he could fly
Back and forth beneath the sky
I must go back and tell my friends
This wondrous world waits here for them
But wings and water don’t combine
So he would have to bide his time
He flew around this heavenly place
Then in the pond he saw his face
Changed from who he used to be
His friends won’t know that it is he
So he will wait until the day
Up the stem they make their way
And they can play and fly so free
Together for eternity
-Roisin
This dragonfly visited Andy's Auntie Eimear and Uncle Ed on his first birthday
August 15th, 2010 | Posted in Family News, News | No Comments »
The month of August has been designated as “SMA Awareness Month.” We started this month with a bang as Sophia’s Cure, a non-profit SMA foundation, was awarded a $250,000 grant in the Pepsi Refresh Everything Contest! Thank you for voting every day to make this happen!
During the remainder of the month, several activities are scheduled throughout Tampa Bay, Florida, (and throughout the nation) to promote SMA awareness and to raise funds for a cure. We hope that you will join our family at one or more of these local events:
• SMA Awareness Candlelight Tribute – Join us as we remember those we have lost to SMA in this special sunset ceremony. Families are invited to speak about their loved ones. Candles will be provided. (Saturday, August 14, Fred Howard Park at Sunset Beach, 1700 Sunset Drive, Tarpon Springs, 7:00 p.m.)
• Bike Night at Quaker Steak & Lube – The FSMA Greater Florida chapter will have a booth at this popular event in Clearwater, Florida, where we will sell rare Harley Davidson Ireland T-shirts, not found in the United States, and FSMA merchandise. All sales proceeds will go directly to SMA awareness, outreach and research efforts. (Wednesday, August 18, Quaker Steak & Lube, 10400 49th St. N., Clearwater, 6:00 p.m.)
• “Cure SMA with Mary Kay” – In support of SMA Awareness Month, Cadillac Senior Sales Director Vicki Piccirilli and her regional team of Mary Kay consultants, based in Tampa, Florida, will donate 10 percent of sales made at Mary Kay parties held between Sunday, August 22, and Tuesday, August 31. Contact Vicki at 813-997-3560 or online at http://www.marykay.com/vicpic to schedule a Mary Kay party.
• “Picture a Cure with Jessica Dana Studios” - Visit Jessica Dana Studios in Lutz, Florida, for a photography session during the month of August, and she will donate 10 percent of all sales to FSMA. Contact Jessica today at 813-949-8652, info@jessicadanastudios.com or http://www.jessicadanastudios.com to schedule!
• Legislative Letter Writing Campaign – Write a letter to your U.S. Senators and Representative(s) asking them to cosponsor the SMA Treatment Acceleration Act (HR 2149, S1158) that currently is before Congress. It is recommended that you e-mail and fax your letter. Sample letters of support are available online at http://www.fsma.org/FSMACommunity/Legislative/ContactingCongress/SampleLetters/. You can find your Representative and Senator at http://www.fightsma.org/index.php?contact_senator.
Thank you for all of your support as we fight for a cure. Together, we will END SMA!
Love,
The Butler Family – Alan, Audra, Lucy and our Angel Andy
August 10th, 2010 | Posted in News, SMA News | No Comments »
July was a wonderful month for our family and for our cause!
Our daughter, Lucy Catherine, was born on July 15, 2010, at 8:08 AM. She weighed 10 pounds, 5 ounces at birth and measured 21.5 inches. We named her Lucy because it means “light,” and she truly is the light at the end of a very dark tunnel. A strong and healthy baby girl, she is SMA-free! Already, Lucy has brought so much happiness back to us.
Also this month, Sophia’s Cure, a non-profit organization founded by the inspiring Gaynor family, won a $250,000 grant in the online Pepsi Refresh Everything contest. The contest could not have been won without the daily voting and promoting done by the SMA community, including members of Andy’s Army. The grant will go directly to funding research for a cure for SMA.
As Sophia’s daddy says, “Miracles do Happen, Let’s Make One!” Thank you for supporting our family and for helping us make our dreams a reality!
– The Butler Family
July 24th, 2010 | Posted in News, SMA News | No Comments »
Your votes continue to make a difference! The Greater Florida Chapter of Families of SMA received a $2,250 check on Saturday, July 10, from the Treasure Tavern in Orlando for winning their Grand Opening online voting contest. Thank you to our friends, family and supporters for voting in this contest during the past month! And, please check out the Treasure Tavern at http://www.treasuretavern.com/.
July 11th, 2010 | Posted in News, SMA News | 1 Comment »
