Prisms is a great organization for finding information, parent support, fund raisers, & conferences for Smith-Magenis Syndrome (SMS). I've been involved with Prisms since Oct. 2000, shortly after our 4th daughter was diagnosed with SMS. Prisms does a wonderful job at putting newly diagnosed families in touch with 'seasoned' families with kids in similar age groups. Prisms also conducts conferences every 2 yrs & with monies raised in fund raisers all over the country, provide several families with 'scholarships' so that they may attend a conference.
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- EIN 54-1652029
- (972) 231-0035
- 21800 Towncenter Plz Ste 266a # 63 Sterling VA 20164-1887 USA
- www.prisms.org
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Children & Youth, Health
Mission: 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.
Programs: In 2017, prisms provided daily telephone support, quarterly newsletters, periodic informational emails, and informational packets for caregivers of persons with sms, and medical professionals. Prisms began the process of updating our website, the largest point of access for families and professionals around the world to gain information on sms. At the end of 2017, prisms moved to free membership for anyone interested in learning more about sms and gaining access to all of prisms programs and services. Prisms continues to sell our 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 2017, prisms expanded 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 our regional representative program, an outreach program comprised of volunteer parents around the world, to better provide support to newly diagnosed families and professionals.
in 2017, prisms hosted the ninth international smith magenis research symposium, bringing more than 40 researchers, clinicians, and professionals together for a day of abstract presentations and networking. Summaries of the presentations were created and shared with the wider community. Prisms continued to promote research opportunities to families around the world in an effort to advance current understanding of sms. The organization launched an sms patient registry and initiated support for a post doctoral fellow to be funded for two years. Prisms continues to support and engage our professional advisory board comprised of internationally recognized basic scientists, educators and clinicians with expertise in sms, genetics, molecular research, education, speech, development, and caregiver and sibling concerns. The pab advises the board of directors and the programming and services. In 2017, a research grant totaling 150,000 and a grant to fund a genetic counselor position totaling 10,000 were awarded.