Cure SMA Reaches Out to Newly Diagnosed Families

Cure SMA has invested nearly $57 million in SMA research in our 30-year history. But funding research is not the whole of our mission. We also provide compassionate, respectful support for all individuals and families who are affected by SMA. One of the primary ways we do this is through outreach to newly diagnosed families.

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. Every newly diagnosed family who contacts us receives a care package from Cure SMA, full of toys appropriate to the child’s type of the disease, impartial information for parents, and useful items suggested by other SMA parents based on their own experiences. Since 2009, the SMA type I care packages have been generously funded by the Jacob Isaac Rappoport Foundation, and Adi & Shaina Rappoport, in memory of their son Jacob. 

At our Annual Conference, we offer special content and support for newly diagnosed families. We offer scholarships so that every newly diagnosed family can attend free of charge and connect directly to the Cure SMA community. Through this program, up to four family member’s registration fees are covered, in the hopes that all newly diagnosed families have the opportunity to attend the largest SMA conference in the world. At the conference, they can gather the most up-to-date information and care on SMA, and also connect with other families from around the world.

These scholarships are all made possible due to the support from many donations, fundraisers and sponsorships specifically given to help more families attend this conference. The Erin Trainor Memorial Fund is currently building an endowment for the permanent funding of the newly diagnosed conference scholarships, allowing newly diagnosed SMA families and individuals the opportunity to attend the conference.

Thank you so much for the information packet. It’s been so helpful to my family as we are learning all we can about our son’s recent diagnosis of SMA type II. The box of toys was such a great surprise and Evan (pictured above) loved it. He especially liked waving the little “Cure SMA” flag around. Thanks for all you do. We went to our first fundraiser a couple weeks ago and met some great people, who offered their support.

-Lynne from Rhode Island

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