Newly Diagnosed
We know that a spinal muscular atrophy (SMA) diagnosis can be overwhelming. You may be confused, scared, frustrated, or uncertain—and your emotions may change daily or even hourly. But you are not alone. Cure SMA is here to support you.
Quick Links
Have you or someone you know been diagnosed with SMA?
Email [email protected] and a member of our team will reach out to provide you with resources and support as you navigate the diagnosis.
Important Things To Know
Treatments are
available.
It is best to act quickly before you see symptoms.
Cure SMA is here for you and can help. Contact us for information, guidance, and support.
Connect With Cure SMA
Please know that Cure SMA is here for you and your family and can offer support and information as soon as you contact us.
Please email [email protected] and provide your name and mailing address so we can send an unbiased, comprehensive information packet on SMA right to your door. The information packet includes our SMA Care Series Booklets that cover a range of topics and information needed to make decisions on treatment and care. They also cover genetics and testing, current research updates, managing daily life, and more. Every newly diagnosed family within the U.S. who contacts us will also receive a Newly Diagnosed Care Package. Each package has toys appropriate to the child’s age and diagnosis with many of the items suggested by other SMA parents based on their experiences.
Our Community Support staff is here for you and your family. This may mean providing information on SMA, connecting you with resources in your community, or just being a listening ear. Our Community Support staff is here for you and your family via phone at (800) 886-1762 or email at [email protected].
Know What To Do
- If your baby was diagnosed through a newborn screening test, contact your pediatrician or other healthcare provider, and share your test results if you have not already. Say it’s urgent that your baby get an appointment
- You may already have confirmation of an SMA diagnosis, or you may be waiting for a blood test to confirm the diagnosis. If you are waiting, it may take one to two weeks to get results. While you wait, continue to care for your child as you always have. You should not do anything different, unless the child shows any unusual signs or symptoms
- Ask your healthcare provider for a referral to a specialist. Often, though not always, you will be referred to a pediatric neurologist, a doctor who specializes in diseases of the nervous system in children
- Get more information and support by connecting with Cure SMA
Participate in a Cure SMA Survey
The SMA Care, Outcomes, and Reported Experiences (CORE) Survey aims to understand the diagnostic journey, time to treatment, and motor outcomes over time for newly diagnosed individuals (diagnosed in the last 3 years).
Eligible participants include primary caregivers of individuals with 5q SMA that currently reside in the United States or individuals that are 18+ years of age with 5q SMA that currently reside in the United States.
Please email the first and last name of you and the individual with SMA, as well as the year of SMA diagnosis to [email protected] if interested.