Each year, while much of our community is gathered together, we use the Annual SMA Conference to recognize several individuals, families and foundations who have provided special support to the Annual SMA Conference and the SMA community.
Here are this year’s awardees. On behalf of the entire community, thank you for all you do!
Shaina and Adi Rappoport and Family
The Jacob Isaac Rappoport Foundation was started by Shaina and Adi Rappoport in memory of their shooting star, Jacob. For 14 years, they have provided incredible support to the conference, sponsoring the Type I Reception, the Children’s Program, and the Teen Social. The Foundation also sponsors Type I Care Packages throughout the year.
Barbara and Gene Trainor and Family
The Trainor family started the Erin Trainor Memorial Fund in memory of their daughter, who passed away in 1994 from SMA type I. The Erin Trainor Memorial Fund has raised over $710,000 toward the family’s initial goal of $1 million. The ETMF generously provides conference scholarships for newly diagnosed families.
Richard Curran, Aaron Smith and Jennifer Miller-Smith, and Expo CCI
Through Expo CCI, Richard Curran, Aaron Smith and Jennifer Miller-Smith have gone above and beyond in donating all the signage for our Annual SMA Conference for several years now. They help with conference layouts, signage needs, special requests, and they assist in setting up and organizing the signage while on site.
Meredith and Patrick Woodruff and Family
Meredith and Patrick Woodruff started the Miller McNeil Woodruff Foundation in honor of their son, Miller, who lived 87 days before passing away from SMA type I. Thanks to their generosity, many families from their home state of Arkansas were able to receive a scholarship to the 2015 Annual SMA Conference.
Jill Jarecki, PhD
Jill Jarecki, PhD, has now been Cure SMA’s research director for 10 years. Under Jill’s leadership, Cure SMA has funded $26 million in research grants, the SMA drug pipeline has doubled in size—from 9 to 18 programs—and the number of companies investing in SMA drug development has grown from 1 to 15. Jill’s expertise, leadership, and passion have helped make all of these advances possible.
Richard Rubenstein is chair of the Cure SMA Board of Directors. His passion, dedication, leadership, and compassion are crucial to the health and growth of our organization. We especially recognize the added time and effort he has put in the last several months in preparation for the conference.
Mary Schroth, MD
Dr. Mary Schroth chairs the Cure SMA Medical Advisory Council, which is responsible for many of the workshops and events at each Annual SMA Conference. In addition, Mary provides key leadership to other support & care programs, such as the care series booklets. At this year’s conference, we announced that Mary is stepping into a new role as Cure SMA’s medical professional education consultant.