News

March 5, 2019

Biogen Provides 2019 Community Update on Spinraza

Biogen Provides 2019 Community Update on Spinraza

Dear members of the SMA community,

As we celebrate Rare Disease Day 2019, we are honored to continue supporting the spinal muscular atrophy (SMA) community. In recent weeks and months, we engaged the community on a number of different initiatives and are excited to share updates on our...

READ MORE   |  

Topics: Clinical Trials, Research, Front Page News

March 1, 2019

Join a Walk-n-Roll Near You

Join a Walk-n-Roll Near You

The Cure SMA Walk-n-Roll is a fun, family-friendly event that supports Cure SMA’s mission of driving breakthroughs in treatment and care and providing families the support they need for today. We welcome you to join us as an individual or start a team with your family, friends,...

READ MORE   |  

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

March 1, 2019

Genentech/Roche and Cure SMA to Co-Host Webinar

Genentech/Roche and Cure SMA to Co-Host Webinar

On Monday, March 11th, at 12pm CST (10am PST/11am MST/1pm EST) Genentech/Roche and Cure SMA will co-host a webinar for the SMA community. During the webinar, you’ll hear from Genentech/Roche on their history working with the SMA community, and their investigational medicine risdiplam....

READ MORE   |  

Topics: Clinical Trials, Research, Front Page News

February 27, 2019

New Dates and Locations Announced for 2019 Summits of Strength

New Dates and Locations Announced for 2019 Summits of Strength

Cure SMA is pleased to announce that we will be continuing the Summit of Strength Program in 2019, adding 20 new events from March through November.

The Summit of Strength is a single-day educational event hosted by Cure SMA. Summits are crafted to provide information for people of all...

READ MORE   |  

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

February 26, 2019

Scholar Rock Announces Positive Interim Results from Phase 1 Trial of SRK-015 in Healthy Volunteers and Updates on Future Development Plans

Scholar Rock Announces Positive Interim Results from Phase 1 Trial of SRK-015 in Healthy Volunteers and Updates on Future Development Plans

Scholar Rock today announced positive interim results from the ongoing Phase 1 single- and multiple-ascending dose clinical trial of SRK-015 in...

READ MORE   |  

Topics: Clinical Trials, Research, Front Page News

February 25, 2019

Community Spotlight: Kristen Smith

Community Spotlight: Kristen Smith

The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy.

Kristen Smith describes herself as an artist and advocate. A powerful combination during a time where people across the country are standing...

READ MORE   |  

Topics: Community & Awareness, Advocacy, Front Page News

February 22, 2019

Arkansas and Florida Adopt SMA Newborn Screening

Arkansas and Florida Adopt SMA Newborn Screening

We are thrilled to share that both Arkansas and Florida recently adopted SMA to their state newborn screening panels! They now join the growing list of states that have adopted SMA to their newborn screening panels.

Arkansas Adopts SMA Newborn Screening

Congratulations to...

READ MORE   |  

Topics: Community & Awareness, Advocacy, Front Page News

February 22, 2019

Cure SMA Awards $150,000 Grant to Veronica Pessino, PhD, Salk Institute for Biological Sciences

Cure SMA Awards $150,000 Grant to Veronica Pessino, PhD, Salk Institute for Biological Sciences

Audrey Lewis founded Families of SMA, now Cure SMA, 34 years ago. Audrey recognized early on the importance of attracting new and talented researchers to SMA, with the hope that they would commit their careers to developing a treatment and cure for SMA.

Cure SMA honors Audrey’s...

READ MORE   |  

Topics: Our Impact, Research, Front Page News

February 21, 2019

Community Spotlight: Amber Bosselman

Community Spotlight: Amber Bosselman

Amber Bosselman is your typical 22-year-old college senior. She is currently studying psychology in Idaho and planning to get her master’s degree in industrial psychology. Amber’s life is similar to other students, except she was born with a rare disease called spinal muscular...

READ MORE   |  

Topics: Community & Awareness, Conference, Front Page News

February 13, 2019

Show Your Rare. Show You Care.

Show Your Rare. Show You Care.

1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare...

READ MORE   |  

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

Items 51 - 60 of 643  Previous12345678910Next

© 2019 Cure SMA | Cure SMA is recognized as tax-exempt under section 501(c)(3) of the Internal Revenue Code. EIN: 36-3320440. | Privacy Policy

Powered by Blackbaud
nonprofit software