Dear Friends,
Welcome to 2019! The start of the new year is a fantastic opportunity for us to share the exciting things we have planned for the new year. Here are a few things you can expect from us in 2019. Stay updated on the progress of our 2019 commitments by following us on Facebook, Twitter and Instagram.
Race Toward a Breakthrough in 2019
Earlier this month, Cure SMA released information about our new and expanded endurance program. Cure SMA’s endurance program features new gear and ample fundraising opportunities in over 30 races! Not a runner? Don’t worry! You can support any team for any race from the New York City Marathon to Little Rock Ugly Sweater Race in Arkansas.
Celebrating Rare Disease Month
February 28 is internationally recognized as Rare Disease Day. Here at Cure SMA, we’re celebrating our community throughout the month. Look out for more community spotlights and fun activities for the whole family to take part in to raise awareness of SMA.
With a new Congress, legislators will introduce the Newborn Screening Saves Lives Reauthorization Act. The Newborn Screening Saves Lives Reauthorization Act will renew federal programs in February that support each state’s newborn screening programs. We also continue to work toward our goal of having all 50 states screen newborns for SMA.
Other advocacy opportunities that we will roll out throughout the year include increasing funding for biomedical research and making sure the SMA community’s needs are met in special education programs. Stay tuned for more information on how you can join our advocacy efforts!
Exciting Basic Research Funding Announcements
In March and April, we’ll be announcing another round of basic research funding, with grants totaling $1 million dollars! Basic research projects investigate the biology and cause of SMA to identify the most effective strategies for drug discovery.
Basic research allows us to continue growing the SMA drug pipeline in both breadth and depth, until we reach our goal of treatments tailored to all ages, stages, and types of SMA.
We will also continue our commitment to increasing access to treatment, by broadening timely insurance coverage, expanding the number of treatment sites available, and reducing other barriers to access.
Local Cure SMA Support in Your Area
We focus on local support and local activities year-round but will take an extra focus on Cure SMA’s local support to the SMA community during April. We will continue providing teens and adults with care packages. As of December 2018, we’ve sent over 500 support care packages to adults nationwide!
As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized and local support. This year, we plan to host 20 Summit of Strength events across the U.S.! In 2018, over 1,150 people attended symposiums in over 16 cities. Register for a Summit of Strength near you. The first Summit of Strength of the year will be held in Raleigh, North Carolina.
We will also continue expanding our SMA Care Center Network, with a goal of two dozen geographically diverse centers by the end of 2019. Stay tuned for details on a webinar revolving our SMA Care Center Network soon.
Gearing up for Conference
The 2019 Annual SMA Conference will be held June 28 – July 1 at Disneyland in Anaheim, CA. In June, we will be sharing information and fun posts about planning for our annual conference.
Our annual conference is the largest SMA conference in the world! Through the conference, we bring together researchers, healthcare professionals, and families to network, learn, and collaborate.
Register for the 2019 Annual SMA Conference!
SMA Awareness Month
SMA Awareness Month is the most exciting time of the year. While our community works year-round to raise awareness of and funds for SMA, August is a wonderful time to spotlight those efforts. Expect more events, community spotlight and fun social media activities throughout the month as we continue to raise awareness of SMA.
NDEAM
2018 was the first year we celebrated National Disability Employment Awareness Month (NDEAM). NDEAM is a month dedicated to learning about the experiences of adults living with SMA, as they navigate the successes and challenges of job searches and career paths. Thanks to new treatments and a better standard of care, people with SMA are living longer and stronger. Still, we understand the need for more information, services and support for adults living with the disease.
Supporting our Caregivers
It is important to give thanks the caregivers in our life. Cure SMA will celebrate National Family Caregivers Month in November to thank family members, friends and volunteers. Throughout the month, we will have community spotlights highlighting the caregivers in the lives of children, teens, and adults living with SMA.
We look forward to another year filled with exciting, uplifting and helpful projects!
Sincerely,
Cure SMA