Information Packets

SMA information packets are one of the primary ways Cure SMA supports all members of the SMA community.

If you are a newly diagnosed family, you can request an SMA info packet. We also make SMA info packets available to anyone who requests one, at no charge. In addition to newly diagnosed families, this could include:

  • Families or individuals not newly diagnosed who are looking for more comprehensive information on SMA.
  • Relatives, friends, or supporters of someone with SMA who want to learn more about the disease.
  • Healthcare providers—including doctors, nurses, therapists, nutritionists, etc.—or healthcare students in training, who want to raise the standard of care for those affected by SMA.

Please call our office 800.886.1762 or email to receive an information packet.

Information Packet Contents

We are continually updating our SMA information packets to bring you the most timely and useful information on SMA. This typically includes the following.

Care Series Booklets

Our SMA Care Series Booklets are written by experts, to ensure the quality and accuracy of information. They are then reviewed by families, to ensure they are written accessibly, and cover the questions that are most important to our community. Currently, we have six care series booklets available:

  • Understanding SMA
  • Cure SMA Family Support and Patient Services
  • Caring Choices for Parents of Infants with SMA Type I
  • The Genetics of SMA
  • Breathing Basics
  • Nutrition Basics

We continue to add new booklets. Our seventh booklet, on the musculoskeletal system, will be released later this year.

You can also download copies of our care series booklets on our support & care publications page.

Past Publications

Included in each information packet is a selection of past issues of Compass, our research publication. In addition, about a month after you receive the information packet, you will also receive a selection of past issues of Directions, our biannual family newsletter.

While these are typically more recent issues, you can download additional past issues of Compass via our research publications page, and Directions via our support & care publications page.

Information on The Annual SMA Conference

Our information packets include information on The Annual SMA Conference. Held each year, the conference brings together researchers, healthcare professionals, and families to network, learn, and collaborate. It is the largest conference in the world focused on SMA. The family conference includes a variety of workshops, keynote sessions with leading researchers, a family-friendly research poster session, and more—plus fun events like our dance party, meet-and-greet, pajama party and movie night, and teen and adult social activities. The packet will include information on the conference generally, and on our scholarship opportunities specifically for newly diagnosed families.

Other Resources

Our information packets also contain:

  • Timely information on new clinical trials
  • Research news
  • Other items of interest

For Healthcare Providers

If you are requesting a packet as a doctor, nurse, or other healthcare provider, please be sure to mention that when you email or call. We will send you a special packet that includes information developed for your unique role in the SMA community.

© 2019 Cure SMA | Cure SMA is recognized as tax-exempt under section 501(c)(3) of the Internal Revenue Code. EIN: 36-3320440. | Privacy Policy

Powered by Blackbaud
nonprofit software