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“$200K For SMA” Goal Surpassed! GSF Signs On To Continue Funding

February 10, 2011 by Victoria Strong

We did it!

That's right, we ALL DID IT!

In just six months since launching the "$200K for SMA" fundraising challenge, the Gwendolyn Strong Foundation and FightSMA -- and all of our wonderful supporters -- not only raised $200,000 for gene therapy research -- we blew it out of the water! With the help of literally thousands of donors, hundreds of organizers, 60+ fundraisers (see list below), and through our partnership with FightSMA, together we have raised more than $250,000!!! In. Just. Six. Months.And because we have raised beyond what was expected, we are able to already begin funding the next critical phase of necessary research required to bring gene therapy out of the lab and to the thousands impacted by spinal muscular atrophy!!!

So what has been funded? Funded --> Safety and Toxicity Studies. We truly believe the GSF slogan -- "Together we can End SMA -- One person and one dollar at a time" -- and that every dollar makes a difference. Therefore, we are extremely protective of our donors and where dollars are allocated. As with all of our research fundraising programs, we put a strict, targeted grant agreement in place to safeguard that 100% - one hundred percent - of all money raised goes to specific portions of research. And with the oversight and experience of FightSMA and their esteemed scientific advisors, once dollars are donated they work diligently to ensure funds are used efficiently, productively, and in keeping with the grant agreement terms.

FightSMA and The Gwendolyn Strong Foundation teamed together to raise $250,000 for an important step forward for SMA gene therapy research. This is the first collaboration between FightSMA and The Gwendolyn Strong Foundation on a jointly funded project that in a matter of months, went from concept to fully funded. This would not have been possible without the extremely dedicated effort from the Strong family and all of the SMA families and friends that reached out to help over the past several months. The gene therapy project is led by Dr. Brian Kaspar (Nationwide Children's Hospital). Recently, Dr. Kaspar and colleagues have shown dramatic survival benefits using scAAV9-SMN vectors. It is a long road from mice to humans and to bring this vector closer to a clinical trial, many steps must occur, with safety and toxicology studies being essential. This is where FightSMA and The Gwendolyn Strong Foundation have come together and provided support. This is clearly a community-wide effort and it will take more money and more time to bring a gene therapy trial to fruition and FightSMA and The Gwendolyn Strong Foundation are continuing to push hard to make this a reality. -- Dr. Chris Lorson, PhD, University Missouri-Columbia and Science Director of FightSMA

I am very thankful for the FightSMA and Gwendolyn Strong Foundation funding of $250,000 our lab has received to date funding that has allowed the initial safety and toxicity studies to be conducted. We are in the middle of these key studies, and so far, all looks good. -- Dr. Brian Kaspar, PhD, Principal Investigator at Nationwide Children's Hospital

 

A humongous, enormous, tremendous THANK YOU to everyone involved in reaching this goal. With your help reaching out to friends and family, organizing fundraisers, supporting fundraisers, and letting your community know how they can help, together we did it! Thank you for all of your dedication and support! Thank you for believing in this research and entrusting us with your hard work. And thank you for being an important part of the "$200K for SMA" campaign and helping move this research forward!

In no particular order, this is the result of GSF's "$200K for SMA" campaign and we celebrate YOU for making a difference!!! Click here to see it scrolling on the Gwendolyn Strong Foundation website. (Note: this list does not include FightSMA's incredible supporters, but they are also enormously appreciated and have made a tremendous difference!):

  • GSF: General donations -- $15,000
  • Belmont Elementary School Penny Harvest - In Memory of Owen Shuler, New York -- $830
  • Burks Family: Jadon's Hope Wristbands - In Honor of Jadon Burks, Kansas -- $1,500
  • Zahn Family: To Shave or Not To Shave - In Honor of Lucy Zahn, Wisconsin -- $13,000
  • Stephen Taylor: 100 Miles 4 Owen - In Memory of Owen Simmons, Massachusetts -- $11,600
  • GSF: Cold Springs Elementary School, California -- $665
  • Bebessentials Accessories, Ohio -- $2,165
  • Bebessentials: Strawberry Festival Duck Race, Ohio -- $1,000
  • Germantown First Church of God: Vacation Bible School, Ohio -- $500
  • Real Estate For A Cure - In Honor of Zane Schmid, Pennsylvania -- $2,952
  • Lauren Lundy O' Connor: Team Run 4 Owen - In Memory of Owen Shuler, New York -- $9,575
  • Caroline Lamont: Family Garage Sale - In Honor of Hayden McIntyre, Canada -- $2,000
  • David Price: Tri for SMA - In Honor of Gwendolyn Strong, New York -- $2,261
  • GSF: May Day Sidewalk Sale, California -- $5,000
  • In Honor of Isaac Portugal's 1st Birthday, California -- $631
  • In Honor of Margaret Deakyne's 1st Birthday, California -- $450
  • Steve Churchill - In Memory of Zane Schmid, Pennsylvania -- $12,240
  • Step Up For Stephen - In Memory of Stephen John Ruocco, New York -- $410
  • Webster Family: Live, Laugh, Breathe Carnival - In Memory of Makenzie Webster, Utah -- $15,181
  • GSF: Jimmie Johnson Foundation Helmet of Hope, North Carolina -- $30,000
  • Beasley-Wright Family: Through Eli's Eyes Walk - In Memory of Eli Beasley-Wright, Texas -- $450
  • Tri to Fight SMA - In Memory of Zane Schmid, California -- $380
  • Kenny Kearns: Angel For Zane - In Memory of Zane Schmid, Pennsylvania -- $108
  • Gustafson Family: ECFR Poker Tournament - In Honor of Nicholas Gustafson, Washington -- $750
  • GSF: Taffy's Pizza Fundraiser, California -- $185
  • In Honor of Callie Golden, North Carolina -- $2,316
  • In Memory of Logan Harman, Arizona -- $285
  • In Honor of Drew Draz, Minnesota -- $338
  • Molly's Mommy Friends - In Memory of June Marie Howsden, Colorado -- $3,684
  • GSF: Shop To End SMA, California -- $1,000
  • Gooden Family: Picky Chick Consignment Sale - In Honor of Nora Gooden, Tennessee -- $1,441
  • Team Lucy's Legs - In Honor of Lucy Zahn, Wisconsin -- $125
  • Yolanda Beeler: Run For Nora - In Honor of Nora Gooden, Tennessee -- $1,009
  • Golden Family: Spaghetti Night - In Honor of Callie Golden, North Carolina -- $1,500
  • Magda Cardoso: 50 Miles of Positivity - In Memory of Owen Simmons, New York -- $2,980
  • Aunt Anna's Etsy Shop - In Honor of Ava Clark, Texas -- $369
  • Nerds For Nora - In Honor of Nora Gooden, Minnesota -- $275
  • Mia's 30th Birthday Concert at the SoHo - In Honor of Mia Hultgen, California -- $5,000
  • In Honor of Veronica St. Onge's 6th Birthday, Montana -- $175
  • In Memory of June Howsden on her 1st Birthday, Colorado -- $150
  • GSF: Trike-A-Thon, California, $1,714
  • GSF: Charm Bracelets by Tanya Francis, Canada -- $950
  • In Honor of Gwendolyn Strong's 3rd Birthday, California -- $3,300
  • Micah March - In Honor of Micah Marshall, California -- $1,905
  • In Honor of Kathleen Blakeney's Birthday, Texas -- $750
  • In Honor of Sheila Eichele's Birthday, Washington -- $360
  • In Honor of Lara Emanuele, Australia -- $1,400
  • GSF: Las Vegas Rummage Sale, Nevada -- $2,077
  • In Memory of Owen Simmons, Massachusetts -- $6,025
  • In Honor of Ciara Van Deloo, New York -- $1,250
  • In Honor of Giselle Deweiler's 1st Birthday, Pennsylvania -- $400
  • Christopher Finlan: Not A Fire Exit, Pennsylvania -- $4,000
  • In Memory of Jonas Coleman & in Honor of Maggie Coleman, Utah -- $575
  • In Honor of Samantha Allen, Kansas -- $775
  • In Honor of Amanda Cordoze Vallarino, Panama -- $1,590
  • In Honor of Kathleen Salus' Birthday, Illinois -- $210
  • In Honor of Christine Thurston's Birthday, Washington -- $175
  • In Honor of Alexa, Jaci, and Amber Felix's Birthdays, Arizona -- $530
  • GSF: My Bunny and Me, California -- $200
  • Edwards Family: Raffle for Research - In Honor of Hunter and Cody Edwards, Montana -- $250
  • In Memory of Violet Wehrkamp, Pennsylvania -- $1,500
  • Couture To Cure SMA - In Honor of Lucy Zahn, Wisconsin -- $720
  • Kids Event - In Honor of Amanda Cordoze Vallarino, Panama -- $5,000
  • Howell Family: Casino Night - In Honor of Lexx Howell, Canada -- $10,000
  • Team Jenna: In Honor of Jenna Boguhn, New York -- $257
  • Burks Family: Jadon's Hope Climb4SMA - In Honor of Jadon Burks, Kansas -- $45,753
  • GSF: Golf For A Cure, California -- $12,000
  • In Honor of Ethan Turenchalk's 3rd Birthday, California -- $806

We did it! We ALL DID IT!!!

Soooo....what's next??? Stay tuned for more information, but we aren't stopping. Are you? Let the fundraising continue!!! Together we will END SMA -- One person and one dollar at a time!!!

Here is a video of Dr. Kaspar talking about his exciting gene therapy research:

Talk About It

Thank you so much for sharing this!!! Not only is it awesome to see the community come together, but it really does show that any donation can make a difference! It was great to see Dr. Kaspar's video as well smile Exciting times! Praying that things continue to move speedily along...
Posted by Ashley Jones on 2011-02-10 11:50:30
Outstanding!
Posted by MT Grandma on 2011-02-10 12:51:56
It's a miracle - and with Gwendolyn to share it. Congratulations on your hard work really making a difference.
Posted by Julie Brennan on 2011-02-10 17:58:21
You are inspiring! Thank YOU for all that you do!
Posted by Bridget on 2011-02-10 19:39:39
I have but one dream and that is a cure for our SMA families ! Dr. Kaspar you give us HOPE!!! Gwendolyn Strong Foundation-you give us STRENGTH !! Thank you both.
Posted by Brooklynn's "Gidget" on 2011-02-11 08:13:39
What an accomplishment! FANTASTIC!!
Posted by emomatic on 2011-02-11 08:50:08
[...] already know that GSFs original “$200K for SMA” goal was far surpassed — YEEHAW!!! But we aren’t stopping there and we’re as dedicated and motivated as [...]
Posted by We Did It! Now Let's Do It AGAIN! "$200K for SMA" Campaign Continues to Fund Critical SMA Research | Gwendolyn Strong on 2011-03-01 10:02:08

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