Organizations Filed Purposes:
PRISMS provides a range of services for persons with SMS telephone support, database of registered families, newsletters, informational packets for caregivers and medical professionals. P.R.I.S.M.S., Inc. engages individuals with medical and scientific expertise to serve on its Professional Advisory Board, conducts an international conference.
PRISMS is dedicated to providing information and support to families of persons with SMS, sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.
In 2019, PRISMS provided daily telephone support, periodic informational emails/newsletters, quarterly webinars, and informational packets for caregivers of persons with SMS and medical professionals. PRISMS offered free membership for anyone interested in learning more about SMS and gaining access to all of PRISMS programs and services. PRISMS continues to sell the resources On the Road to Success with SMS A Guidebook for Schools and A Smith-Magenis Guidebook, Exploring Adult Residential Living to families and professionals interested in learning more on these topics.
In 2019, PRISMS promoted social media and awareness campaigns, including PRISMS birthday, SMS Awareness Day, and involvement in Rare Disease Day campaigns. PRISMS released informational brochures and bookmarks to increase understanding of the rare condition in communities around the world. PRISMS grew the Regional Representative program, an outreach program comprised of volunteer SMS family members around the world, to better provide support to newly diagnosed families and professionals.
In 2019, PRISMS hosted the 10th Smith Magenis Syndrome Research Symposium in conjunction with the Smith Magenis Sydrome Research Foundation. This event brought together almost 60 researchers and professionals interested in learning more about Smith Magenis Syndrome and sharing results of their research, with 19 total abstracts presented. PRISMS provided travel scholarships for 3 early-career scientists and all attendee registration was free to promote interest in SMS research. PRISMS continued funding research at Baylor College of Medicine and the University of Michigan. The grant to Baylor provides ongoing support for the Smith Magenis Syndrome Patient Registry, a collaboration between Dr. Sarah Elsea at Baylor and PRISMS, which aims to collect ongoing information about individuals with SMS through an online questionnaire platform. The grant to the University of Michigan provides support for a post-doctoral fellow studying the function of the gene affected in SMS, RAI1.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Casey Gorman | Executive Director | 40 | $31,154 |
| Diane Erth | Board Member | 3 | $0 |
| Denien Rasmussen | Board Member | 3 | $0 |
| Allison Stephanouk | Board Member | 3 | $0 |
| Percy Huston | Board Member | 3 | $0 |
| Sarah Elsea Phd | Board Member | 3 | $0 |
| John Mayer | Immediate Past-President | 5 | $0 |
| Phil Ruedi | Treasurer | 5 | $0 |
| Tina Mcgrevy | Secretary | 5 | $0 |
| Margaret Miller | Vice President | 5 | $0 |
| Brandon Daniel | President | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202021959349302177_public.xml