PRISMS INC
Education, Awareness, Research
Programs and results
What we aim to solve
PRISMS' mission is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS. Our vision is to be the leader of the worldwide SMS community, that engages, inspires, and empowers families, physicians, educators, researchers, and others so they can support and improve the lives of everyone affected by SMS.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
International Conferences
PRISMS hosts an international educational conference every 2 years to provide educational programs and social opportunities to SMS families and professionals. Attendance averages 370 individuals, many of whom are first-time attendees. Our 2018 conference, our 10th gathering, was held in Pittsburgh, PA. The 2022 conference is scheduled for August 4 – August 6 in Dallas, TX.
Facebook Support Group
PRISMS moderates a private Facebook support group to help our families communicate and support each other. In 2019 we had 2,550 Facebook group members.
Regional Representatives
PRISMS provides a network of support with regional representatives. These representatives talk to newly diagnosed families, host regional get togethers and build a sense of local community and support.
SMS Patient Registry
The SMS Patient Registry is the center of PRISMS research efforts. The registry allows families around the world to provide information about their child with Smith-Magenis Syndrome. This data is then available to PRISMS and its academic partners to help us all improve our understanding of SMS.
SMS Research Symposium
The SMS Research Symposium is the only event of its kind focused on current research related to Smith-Magenis Syndrome. The symposium is an opportunity to share research updates, engage in critical discussions about SMS, and foster prospective collaborations. Researchers from around the world are invited to participate in the symposium, and PRISMS provides travel scholarships for qualifying attendees. PRISMS Research Symposium is relevant for international researchers and professionals at every stage of their career – graduate students, post-docs, faculty members, clinicians and practitioners.
Webinars
The PRISMS Webinar series brings educational information and resources about Smith-Magenis Syndrome to the community at large, (via social media, technology, and other), in a more dynamic way, to encourage engagement between families and professionals. Archived webinars are available on our website at https://www.prisms.org/education/webinars/
Clinic and Research Consortium
The PRISMS Clinic and Research Consortium (PCRC) is designed to expand the availability of comprehensive, clinically appropriate care for the SMS community.
Clinics within the PCRC provide multi-specialty, comprehensive and compassionate care for patients with SMS. The clinics provide families an opportunity to receive medical and clinical care and/or treatment recommendations that they can carry home to their local providers of care and that address the challenges and health concerns associated with SMS. The clinics’ approach to care includes consultation with other treatment specialists as needed while developing a plan of care for each patient that strives for health and well-being.
PRISMS organizes regular meetings of clinicians within the consortium to discuss best practice for treatment of SMS and provide feedback on additional resources that would be helpful for the SMS community.
Where we work
Affiliations & memberships
National Organization of Rare Disorders Member Organization 2020
External reviews
Photos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of website pageviews
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We did not enable Google analytics until summer 2020, so numbers from 2020 and before are not accurate.
Number of website sessions
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We did not enable Google analytics until summer 2020, so numbers from 2020 and before are not accurate.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We did not enable Google analytics until summer 2020, so numbers from 2020 and before are not accurate.
Number of conference attendees
This metric is no longer tracked.Totals By Year
Related Program
International Conferences
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Conferences are typically held every other year. The last in-person conference before the pandemic was held in 2018. A virtual event was held in 2021 and an in-person conference was held in 2022.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
PRISMS is an advocacy, education, and support organization for individuals with Smith-Magenis Syndrome (SMS), their families, and the professionals who serve them. PRISMS is a nonprofit 501(c)(3) organization formed on February 4, 1993 by a group of parents and professionals with a desire to build education, awareness, and research opportunities for all those affected by SMS.
Our goals are to:
1. Further develop and define volunteer activities
2. Establish an internal PRISMS procedure for identifying, soliciting, evaluating, and funding research opportunities
3. Grow revenue on an annual basis
4. Review, update, develop as needed and confirm Board governance policies & procedures
5. Improve resources for all stages of the lifespan
6. Grow the database
What are the organization's key strategies for making this happen?
Moving forward, we aim to utilize our regional representatives as the continued base of support for our community - they will aid us in communicating about our programs, organizing local events, and getting updated for PRISMS communications, as well as their current role of providing local resources and support to families in each area.
We also aim to increase our academic partnerships by expanding our SMS clinics - these clinics will be both clinical and research partners for PRISMS across the United States and help to improve care for our families, as well as contribute to our research efforts, particularly the PRISMS Patient Registry.
Another partnership aim is to continue working with other SMS organizations, particularly the SMSRF in the US and our international partners, to align our efforts in sponsoring SMS research and make sure that SMS patients around the world are receiving the best possible support.
What are the organization's capabilities for doing this?
We have a highly capable Executive Director, two staff members, an engaged board of directors and a Professional Advisory Board. Our SMS community is very committed to our work and supportive of PRISMS and each other. We have dedicated volunteers working with our board on committees to support our various programs (e.g. Regional Representatives, Conference, Education).
What have they accomplished so far and what's next?
We have recently adopted a new strategic plan and are taking the first steps to enacting this. This includes bringing on new staff to increase our capacity and redefining our existing committees to make sure we are making the most of our limited resources.
We were able to bring the SMS community together again at our International Conference in 2022 and are using that momentum to recruit new volunteers and restructure our Regional Representative program to better serve our SMS community. We have also brought on a full-time Events and Community Manager to better support these programs.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
-
Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response
-
What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, Staff find it hard to prioritize feedback collection and review due to lack of time, It is hard to come up with good questions to ask people, It is difficult to identify actionable feedback
Financials
Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more
about GuideStar Pro.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
PRISMS INC
Board of directorsas of 11/17/2023
Mr. Brandon Daniel
No Affiliation
Term: 2020 - 2023
Margaret Miller
No Affiliation
Percy Huston
No Affiliation
Denien Rasmussen
No Affliliation
Diane Erth
No Affiliation
Sarah Elsea
Baylor College of Medicine
Allison Stephanouk
No Affiliation
Amy Pereira
No Affiliation
Jackie Fallenstein
Jason Michaud
Tamara Michelle Lee
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
-
Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No