For over 22 years, we have been working alongside our partner, cureSMA, to help support families and ultimately find a cure for Spinal Muscular Atrophy, the disease that claimed Jacob’s life when he was nine months old. When Jacob was diagnosed, we faced the decision of whether to manage his disease with palliative care or to use machines that he would likely become dependent on to breathe. He was born before facebook support groups, clinical trials, and FDA approved treatments. In short, he was born before newly diagnosed parents like us were given hope for our newborn babies.

Had Jacob been born today, he would have been screened for SMA at birth, and received one of three FDA‐approved treatments within weeks. He might have developed typically, alongside his unaffected siblings. We would have been told to plan for a future that included our son, instead of being told that he had a year to live. We are filled with gratitude for our loyal supporters and friends, who have made it possible to be part of the hope that is now very much a part of an SMA diagnosis. And while we are proud of what has been achieved, even with approved treatments,there is still no cure. Individuals with SMA have many challenges and much is unknown about their futures.

Continue Our Legacy On May 1st, we are hosting An Evening of Gratitude & Hope, at Boca West Country Club from 6‐8 pm. Our first in‐person fundraiser since 2017, the event is a celebration of how far we have come, and a call to continue to help us raise funds to achieve our ultimate goal of finding a cure. We hope to raise enough money to continue providing the support programs we have in the past, while also helping to advance much needed therapies for people living with SMA. JIRF and Cure SMA need your support to meet our $75,000 goal this year.

Your donations make a difference. With your support we will:

• Support the Children’s Program at the 2025 Annual SMA Conference. The Children’s Program gives kids a supervised place to hang out and play while parents attend workshops.
• Continue to provide support to every family who will receive an SMA diagnosis in 2025 by funding Cure SMA’s Newly Diagnosed Care Package Program.
• Allocate funds to research focused on developing additional treatments that will help restore lost muscle strength and function.