News

April 2, 2018

Cure SMA Welcomes Back AveXis as a 2018 National Premier Partner

Cure SMA Welcomes Back AveXis as a 2018 National Premier Partner

Cure SMA is excited to announce that AveXis is returning as a National Premier Partner for 2018.

As part of their partnership, AveXis is generously supporting our Chapter Leader Summit, a full day of training and information-sharing for 70 chapter...

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Topics: Our Impact, Events & Fundraising, Front Page News

March 26, 2018

Cure SMA Welcomes Back Biogen as a National Premier Partner for 2018

Cure SMA Welcomes Back Biogen as a National Premier Partner for 2018

Cure SMA is thrilled to welcome Biogen back as a National Premier Partner for 2018.

As a part of their partnership, Biogen will be sponsoring all walk-n-rolls and galas across the US for the entirety of 2018, as well as the

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Topics: Support & Care, Events & Fundraising, Front Page News

December 12, 2017

“Hope on the Hill" Congressional Dinner Recap

“Hope on the Hill

On Wednesday, November 29 more than 160 people from the SMA community – including government and industry partners – gathered for the 7th Annual “Hope on the Hill” Congressional Dinner in Washington, D.C. Several members of congress attended the dinner including Rep....

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Topics: Events & Fundraising, Advocacy, Front Page News

November 20, 2017

7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone

7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone

This year’s 7th Annual “Hope on the Hill” Congressional Dinner will be held on Wednesday, November 29, bringing together families, government, and industry to mark the first-ever FDA approval of a treatment for SMA, and look forward to the next stages for our community....

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Topics: Our Impact, Events & Fundraising, Front Page News

November 30, 2016

Annual South Florida Gala of Hope Raises over $1 Million in 6 Years

Annual South Florida Gala of Hope Raises over $1 Million in 6 Years

The 6th annual Cure SMA South Florida Chapter Gala of Hope raised a record amount of $310,000 on November 17th. Total funds raised by the gala now exceed $1 million in its six year history.

The event was founded and is organized by Fiorenna Fuentes Israel and Jennifer...

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Topics: Community & Awareness, Events & Fundraising, Front Page News

November 28, 2016

Help Us Shape the Future Together, and Reach our Goal of $750,000

Help Us Shape the Future Together, and Reach our Goal of $750,000

This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug Application for Spinraza (nusinersen) was accepted by the FDA. This means...

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Topics: Our Impact, Events & Fundraising, Advocacy, Front Page News

November 18, 2016

Registration is Now Open for the 2017 SMA Researcher Meeting

Registration is Now Open for the 2017 SMA Researcher Meeting

Registration is now open for industry and academic researchers to attend our 2017 SMA Researcher Meeting, which will be held June 29-July 1 at Disney World in Orlando, FL.

The SMA...

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Topics: Events & Fundraising, Research, Front Page News

November 11, 2016

6th Annual South Florida Gala of Hope Inspires Familes and Supporters

6th Annual South Florida Gala of Hope Inspires Familes and Supporters

The 6th Annual South Florida Chapter Gala of Hope will be held on November 17, 2016, at Ferrari Maserati of Fort Lauderdale, Florida. The event has raised $700,000 over the last 5 years, and organizers Fiorenna Fuentes Israel and Jennifer Miller Smith have set a goal of raising $200,000 for...

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Topics: Events & Fundraising, Front Page News

March 8, 2016

Winter 2015 Issue of Directions Now Online

Winter 2015 Issue of Directions Now Online

The Winter 2015 issue of Directions is now available! Please visit our Support & Care Publications page to download this issue...

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Topics: Community & Awareness, Support & Care, Events & Fundraising, Front Page News

December 10, 2015

5th Annual Congressional Dinner Brings Together Families, Government and Industry

5th Annual Congressional Dinner Brings Together Families, Government and Industry

On December 1, more than 120 people from the SMA community—including government, and industry partners—gathered for the 5th Annual “Hope on the Hill” Congressional Dinner. Several Members of Congress...

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Topics: Community & Awareness, Advocacy, Events & Fundraising, Front Page News

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