- Many groups and organizations are dedicated to spinal muscular atrophy, and can help if you’re looking for support, ways to spread awareness, or places to donate for research or charity.
- Recent research suggests that resources for SMA are crucial to the physical and mental well-being of people with the condition and their families.
- By making use of these resources, you’ll be able to equip yourself with more knowledge, and will hopefully feel more connected to other individuals and families in the SMA community.
While considered rare, spinal muscular atrophy (SMA) is technically one of the most common genetic diseases of its kind. In fact, it’s estimated that between 10,000 and 25,000 children and adults have SMA in the United States.
Just as research into genetic therapies and treatments is on the rise, so are resources for individuals and families diagnosed with SMA. One 2019 study found that resources for SMA were crucial to both the physical and mental well-being of people with SMA and their families.
Whether you’re looking for financial or community support — or perhaps ways you can participate in advocacy or make donations of your own — consider the following resources to help you get started.
Whether you have SMA or are a parent of a child with this disorder, it can be helpful to connect with others who are on the same journey. Additionally, you may be able to share resources, treatment advice, or even emotional support during challenging times.
If you’re able to network in person, consider the following support groups:
- Cure SMA
- Muscular Dystrophy Association (MDA) summer camp (for children)
- National Organization for Rare Disorders
- SMA Angels Charity
While it’s helpful to connect with others going through an SMA journey, you may find online support groups beneficial, as well. Check out the following list of social media groups dedicated to SMA:
- SMA Support System, a private group on Facebook
- Spinal Muscular Atrophy Safe Haven, a private group on Facebook
- Spinal Muscular Atrophy Support Group, a private group on Facebook
- SMA News Today, a community forum
- SMA Support Inc., which offers live and email chat lists
It’s important to use your best judgment when joining any support group. Before signing on, be sure to take time to determine whether they are a good fit for you. Keep in mind that any suggestions offered are not medical advice and you should always talk with your doctor if you have questions about your condition.
If you’re interested in volunteering or donating money to SMA causes, consider checking out the following charities and nonprofit organizations.
Cure SMA’s hope is to one day have a world without SMA, but this vision is dependent on genetic treatments and other research breakthroughs.
For treatment centers, check out Cure SMA’s free locator tool.
Muscular Dystrophy Association (MDA)
Established in 1950, MDA is an umbrella organization for neuromuscular diseases, including SMA. Check out the following links for:
- Strongly, the official MDA blog that includes news, treatment advice, and tips for caregivers
- MDA Engage, which features educational events, videos, and seminars
- a resource list for families, including equipment and travel access
- a list of MDA care centers in your region
- how to make donations to MDA
National Organization for Rare Disorders (NORD)
As a leading organization dedicated to rare disorders in the United States since 1983, NORD offers educational resources and fundraising opportunities for SMA.
The organization also provides:
- critical SMA information for patients and families facing a recent diagnosis
- medication assistance programs to help offset financial strains
- other financial assistance advice
- information on how to get involved with both state-wide and federal advocacy programs
- ways you can donate money
Founded in 2003, the SMA Foundation is considered the world’s leading research funder for this rare disease. You can learn more about its current research efforts here, as well as ways you can donate to future treatment developments.
Aside from SMA support groups and organizations, there are also specific times of the year dedicated to rare diseases and to SMA specifically. These include both SMA Awareness Month and World Rare Disease Day.
SMA Awareness Month
While SMA resources and advocacy are important year-round, SMA Awareness Month is yet another opportunity to increase awareness.
SMA Awareness Month is recognized every August, and it presents opportunities to educate the public about this rare disorder while also raising funds for important research.
Cure SMA has suggestions for ways you can raise both awareness and donations — even virtually. You can also find your local Cure SMA chapter to discover other ways to get involved in SMA Awareness Month.
World Rare Disease Day
Another opportunity to increase awareness is on World Rare Disease Day, which takes place every year on or near February 28.
For 2021, 103 countries were scheduled to participate. The official website includes information on:
- worldwide events
- fundraising opportunities
NORD also provides tips for participation, including:
- virtual events
- social media awareness
Whether you are looking for individual support or advice, ways to spread awareness and volunteer, or opportunities to donate to research, there are groups and organizations dedicated to SMA that can help.
Consider the above resources as starting points to aid in your own SMA journey.
Not only will you be able to equip yourself with more knowledge, but you will hopefully feel more connected to other individuals and families in the SMA community.