A Year of Success, A Future of Hope & SMS Awareness Day #NOV17

2018 has been a banner year for PRISMS and our Smith-Magenis Syndrome community.

With your support, we accomplished incredible success with a number of large initiatives, with huge impact across our community:

    • Hosted the 10th International SMS Conference with an unprecedented attendance.
    • Celebrated PRISMS 25th anniversary serving the global SMS community.
    • Created and distributed PRISMS Newly Diagnosed Guidebook for Families.
    • Launched a FREE membership program to increase awareness and understanding of SMS.
    • Revised and republished SMS Medical Management Guidelines.
    • Designed and launched a new website at www.prisms.org.
    • Funded innovative SMS research at the University of Michigan.
    • Established and promoted the first-ever SMS Patient Registry.
    • And more!

2019 will be another year of growth and accomplishment for the organization. Beginning in January, PRISMS will see a transition of leadership as John Mayer will step down as president to serve as immediate past president, and Brandon Daniel will move into the president’s role. We are grateful for all members of the PRISMS Board of Directors and their commitment to the SMS community.

–Emily Fields, Executive Director

A message from the outgoing president…

At the end of December, I will complete my four-year term as president of PRISMS. Adding in the six years that I served as secretary, I realize I’ve had a role in nearly every phone call or face-to-face meeting since I joined the board in 2008. That is a lot of meetings.

I’ll be moving into the role of immediate past president, filling a place just vacated by Randy Beall, who served 18 years on the board as treasurer, vice president and president.

Maggie Miller, founder and vice-president, has been part of the organization from Day 1. Twenty-five years ago, with her husband Scott, Ann Smith and Brenda Finucane, Maggie had the vision for what PRISMS could be.

I’ve worked with other board members, including Percy Huston, Tina McGrevy, Sarah Elsea and Phil Ruedi—all with many years of service. And I’ve served with relatively new members, such as Denien Rasmussen and Diane Erth, as well as an amazing list of other board members and volunteers.

There is a rich and substantial tradition of service on the board. It has been an honor to work with these incredibly dedicated people, all of whom are focused on making the lives of people with SMS and their families better. I can’t imagine a more important thing to do.

Over these years, we’ve planned conferences and research symposiums. We’ve gathered reports and written books. And we’ve raised funds to provide support and service for our families.

Perhaps most important, we worked together to plan for the hiring of our executive director, Emily Fields—and then we made it happen. It has been truly remarkable to see how our organization has developed with Emily’s leadership, grace and passion.

In my new role as immediate past present, I will continue to be part of the board. I’ll be an advisor and mentor for our new leaders, including incoming president Brandon Daniel. And I’ll continue working with my friends on the Advocacy Committee and find new ways to help our community.

I know there is much more work to do. New families become part of PRISMS every day. I look forward to my new role in support of our organization.

Onward.

–John Mayer

…and one from the incoming president

It is a privilege to continue working with such a dedicated group of parents and professionals in the SMS community! I am honored to move forward in service of this community as the soon-to-be president of PRISMS Board of Directors.

After a successful PRISMS Conference in 2018, I am excited about the plans and initiatives ahead that will positively impact the lives of our SMS family.

–Brandon Daniel

 

Today is SMS Awareness Day! Celebrate Hope with Us!

Today, the Smith-Magenis Syndrome (SMS) community comes together for SMS Awareness Day, a day dedicated to spreading education and understanding of Smith-Magenis Syndrome around the world.

PRISMS and the Smith-Magenis Syndrome Research Foundation (SMSRF) have worked together to develop a Mission Statement for Collaboration in recognition of both organization’s desire and willingness to best support the entire Smith-Magenis Syndrome (SMS) community of families and professionals.
Learn more: https://www.prisms.org/awareness/international-partnership-program/together-for-hope/

 

 

How YOU can join the conversation of hope this #SMSAWARENESSDAY!

 

 

Visit https://www.prisms.org/awareness/sms-awareness-day/ and follow us on Facebook to stay connected and raise your voice for #SMS.