News

April 17, 2018

Registration for the 2018 Annual SMA Conference Closes in Two Weeks

Registration for the 2018 Annual SMA Conference Closes in Two Weeks

The deadline to register for the 2018 Annual SMA Conference is just two weeks away! Registration will close on Friday, May 4th. Over 1,100 people have already registered – don’t miss your chance to engage with families, researchers and medical providers at largest...

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Topics: Support & Care, Conference, 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

March 23, 2018

House and Senate Vote to Increase Federal Funding for Newborn Screening Programs

House and Senate Vote to Increase Federal Funding for Newborn Screening Programs

Today, Congress passed a new federal spending bill, increasing funding for several critical newborn screening programs, that the President also signed. The bill increases funding for the Health Resources and Services Administration (HRSA) Heritable Disorders Program by more than $2...

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Topics: Support & Care, Advocacy, Front Page News

March 13, 2018

Cure SMA to Host Inaugural Clinical Care Meeting

Cure SMA to Host Inaugural Clinical Care Meeting

Clinicians across the country are invited to share experiences, successes and ideas at the inaugural SMA Clinical Care Meeting to be held on Saturday, June 16, 2018 at the 2018 Annual SMA Conference in Dallas, Texas.

As Spinraza and future...

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Topics: Support & Care, Conference, Front Page News

March 1, 2018

Cure SMA Welcomes New Medical Advisory Council Committee Members

We are excited to welcome 20 new members to our Medical Advisory Council (MAC). These clinicians represent eleven specialties, including specialties that were not previously represented on the MAC.

Our new members are:

  • Alison Ballard, RN, MSN, Pediatric Nurse Practitioner and Neuromuscular Care...

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Topics: Support & Care, About Us, Front Page News

February 23, 2018

Last Week's Webinar on Treatment Access and Clinical Trials Now Available

A recording of last week’s webinar updating the community on treatment access and clinical trials is now available online. A PDF of the webinar presentation is also available for download.

An update on...

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

February 16, 2018

Cure SMA Receives Generous Gift

Cure SMA is extremely pleased to announce a generous $620,000 gift has been made to the organization. The donation was made anonymously in honor of William N. Kanehann. Billy had SMA and died in 2013 at the age of 23. We are grateful for this amazing donation in memory of his life.

This gift will be dedicated to supporting new...

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

February 14, 2018

Additional Funding for SMA Care Centers Announced

Cure SMA is pleased to announce the second round of grants from $450,000 in funding, awarded to a total of 9 sites to help increase capacity at SMA treatment centers across the US.

In January 2018, Cure SMA selected five additional treatment centers, totaling $200,000, to...

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Topics: Support & Care, Our Impact, Front Page News

February 12, 2018

Cure SMA Announces Local Educational Symposiums in 16 US Locations

Cure SMA is pleased to announce a slate of one-day local symposiums, beginning late spring and continuing into fall 2018. The symposiums will be held in 16 locations across 15 states across the US. Through these local symposiums, the SMA community will continue to share experiences, advocate for one another, and learn about the latest...

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

February 9, 2018

Winter 2018 Compass Now Available Online

Winter 2018 Compass Now Available Online

The winter 2018 issue of Compass is now available online.

This issue covers Cure SMA’s community survey, and reviews how data is used to improve research, care and coverage in the SMA...

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Topics: Support & Care, Research, Front Page News

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