News

April 8, 2019

Thank You Cure SMA Volunteers!

Thank You Cure SMA Volunteers!

Happy National Volunteer Week! This week we're celebrating our Cure SMA volunteers. 

Each year, Cure SMA hosts over 300 local events, the Annual SMA Conference, and sends out thousands of resources including information packets, care packages, and equipment.  Without our wonderful...

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

April 2, 2019

What is the Summit of Strength Program?

What is the Summit of Strength Program?

Cure SMA is thrilled to continue to provide the Summit of Strength Program to local communities throughout the United States. The 2018 Summit of Strength Program was a great success, and the 2019 Summit of Strength Program has officially begun!

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

March 22, 2019

Team Cure SMA New York City Half Marathon Runners Raise $15,000 for Cure SMA

Team Cure SMA New York City Half Marathon Runners Raise $15,000 for Cure SMA

Nine Team Cure SMA runners completed the 2019 United Airlines New York City Half Marathon on Sunday, March 17. Together, the runners successfully raised over $15,000 for Cure SMA, the...

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

March 14, 2019

Cure SMA Launches Third Annual Community Survey to Address Important Issues in SMA Treatment

Cure SMA Launches Third Annual Community Survey to Address Important Issues in SMA Treatment

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate our priorities to the FDA...

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Topics: Community & Awareness, 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,...

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Topics: Community & Awareness, Events & Fundraising, 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...

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Topics: Community & Awareness, Support & Care, 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...

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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...

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Topics: Community & Awareness, Advocacy, 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...

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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...

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

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