For Newly Diagnosed

We know that an SMA diagnosis can be overwhelming. You may be confused, scared, frustrated, or uncertain—and your emotions may change from day to day, sometimes even hour to hour.

But you are not alone. You are now part of Cure SMA: a network of families, researchers, clinicians, and other professionals who are determined to make a difference. To request information, please email familysupport@curesma.org.

Connect With Cure SMA

If you, your child, or someone else close to you has recently been diagnosed, we encourage you to connect with Cure SMA in one or more of the following ways.

Request a Packet of Information

We provide an unbiased, comprehensive information packet to anyone who requests one. These packets cover topics such as understanding SMA, genetics, testing, current research updates, medical issues, daily life—and more. To request an information packet please email infopack@curesma.org.

Contact Our Family Support Staff

Our family support staff is here to support and assist those affected by SMA. This may mean providing information on SMA, connecting you with resources in your community, or being a listening ear. Our family support staff can be reached via phone or email at 800.886.1762 or familysupport@curesma.org.

Request a Care Package

Every newly diagnosed family within the US who contacts us receives a care package from Cure SMA. Every care package sent out is full of toys appropriate to the child’s type of the disease and many of the items have been suggested by other SMA parents based on their own experiences.

A newly diagnosed binder is also included in every care package. These binders contain important information about SMA, including all of the SMA Care Series Booklets, and a list of resources available in your state. This binder also acts as an organizational tool, so families can keep important medical information about their child all in one location. You can also request a care package at infopack@curesma.org.

Find Your Local Cure SMA Chapter

Cure SMA has 31 chapters across the U.S. Chapters are a great way to meet families in your area to share practical information and advice, or simply to connect with someone who understands what you are going through.

Learn About The Annual SMA Conference

The Annual SMA Conference is the world’s largest gathering of SMA families, researchers, and healthcare professionals.

Each year, the conference has a special program just for newly diagnosed families, as well as a newly diagnosed scholarship program. This program covers all conference registration fees for newly diagnosed families. Through the support of generous donors, we also offer need-based scholarships for families who are not newly diagnosed.

Check Out Our Equipment Pool

Through our equipment pool, Cure SMA loans necessary medical equipment free of charge. Our equipment inventory changes often as new equipment is donated and other items are loaned out. Visit our equipment pool page to learn more about what type of items we send out. To find out if an item is currently available please email equipment@curesma.org.

For Additional Information

Visit our support and care page to see more about the multitude of resources and services we offer for families affected by SMA.

Please do not hesitate to contact a member of our family support staff if you have any questions. Reach out to 800.886.1762 or familysupport@curesma.org or infopack@curesma.org.

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