Prisms, Inc.

Call Website

PRISMS provides support to families of persons with Smith-Magenis Syndrome (SMS)

10/13/2026

PRISMS Board Vice President Jackie Fallenstein attended the 2026 Brumm Patient Advocacy Summit last week at the University of Notre Dame, hosted by the Patient Advocacy Initiative.

This year’s summit focused on the rare disease family journey—exploring the experiences, challenges, and support systems that shape life with rare disease, from diagnosis and navigating care to finding community and advocating for what comes next.

We appreciate Jackie attending this event and sharing what she learned with the PRISMS Board.

10/12/2026

Smith-Magenis Syndrome Awareness Day is November 17! Help us shine a light on SMS by purchasing your new gear.

Orders close in two days (October 14), so place your order before the deadline! Share this link with friends and family so they can help spread awareness!

https://www.customink.com/fundraising/smith-magenis-syndrome-awareness-day-apparel-fundraiser

10/08/2026

DAF Day 2026 is here! A nationwide celebration of generosity through Donor-Advised Funds.

DAF Day is a national day of giving with donor-advised funds. A DAF is a charitable savings account (like a 401k for giving).

Use a DAF to help PRISMS:
• Provide timely, personalized support for newly diagnosed families
• Fund research to increase understanding and treatment of SMS
• Continue to develop important resources for all those impacted by SMS

If you have a DAF account with a charitable sponsor, make a grant today using PRISMS Federal EIN #54-1652029. Ask your DAF representative to include your name and address on the distribution so we can thank you for your generosity and send you updates on your gift’s impact.

Today your DAF can do more than ever before. Join us and be part of the movement!

10/06/2026

Researchers are looking for participants who may be interested in a research study on constipation. Your participation can help researchers learn more about SMS and contribute valuable information that may benefit our community for years to come. If you are interested in participating, please contact the research team.

09/28/2026

Smith-Magenis Syndrome Awareness Day is November 17! Help us shine a light on SMS by purchasing your new gear.

Orders close on October 14, so make sure to get your order in before the deadline! Share this link with friends and family so they can help spread awareness!

https://www.customink.com/fundraising/smith-magenis-syndrome-awareness-day-apparel-fundraiser?utm_campaign=desktop-post-launch-v3&utm_content=smith-magenis-syndrome-awareness-day-apparel-fundraiser&utm_medium=social&utm_source=copy-link

09/24/2026

A guidebook offering recommendations for parents and those caring for individuals with Smith-Magenis Syndrome to approach emotional and behavioral challenges by understanding the person, the syndrome, and effective practices is on the PRISMS website.

Download your copy here:https://prisms.org/wp-content/uploads/2026/02/PRISMS_Emotional_Behavioral_Challenges_SMS-1.pdf

09/22/2026

The PRISMS 13th International Conference featured a diverse range of topics presented by experts and professionals from across the Smith-Magenis syndrome (SMS) community. If you didn't make it to the conference, you can now access a selection of handouts, presentations, and other resources provided by conference speakers for continued learning here: https://bit.ly/4AsjYZR

09/19/2026

PRISMS Regional Representative, Charlene Liao, PhD, has shared that her paper, “Tirzepatide for weight and behavior management in a patient with Smith-Magenis syndrome," has been published and was selected as the JCEM Case Reports Featured Article this week.

Charlene shared her research at the PRISMS conference in Minneapolis this summer. If you were not able to attend the research session at the conference, you can view her presentation here: https://www.prisms.org/wp-content/uploads/pdf/conf/2026/GLP-1_Agonists_for_Weight_and_Behavior_Management_in_SMS-2026.pdf.

Read the full paper here: https://academic.oup.com/jcemcr/article/4/7/luag152/8700455

Congratulations to Charlene and her research team.

09/18/2026

Tiffany Baker recently wrote a book inspired by her sister, Chantell Baker, who had Smith-Magenis Syndrome. Chantell passed away last August at the age of 39, but her memory and the impact she made continue to live on.

Born with Smith-Magenis Syndrome, Chantell experienced the world differently—but she never let that define her. Instead, her life became a beautiful reminder that every person has unique gifts, every life has purpose, and every heart deserves to be seen.

Chantell's memory is honored through this special book, and Tiffany's loving tribute to her beloved sister encourages others in the Smith-Magenis Syndrome community who are caring for a child or adult with SMS to have hope.

To purchase a copy, click here: https://www.amazon.com/Way-God-Made-Friendship-Expectations/dp/B0HGQPBX9Z

09/16/2026

Last Sunday, the annual PRISMS SMS Family Day on the Bay picnic brought together 11 individuals with Smith-Magenis syndrome and their wonderful families.

With sunny skies, cool breezes, and a delicious potluck picnic, it was the perfect setting to relax, laugh, share stories, and simply enjoy being together. But the best part of the day was the connection.

PRISMS Board member and event orgnanizer, Diane Erth, says, "There is something incredibly special about spending time with families who get it — who understand the joys, challenges, laughter, and unique experiences that come with life with SMS. No explanations needed, just understanding, friendship, and community."

Thank you to everyone who came out and made the day so special.

Address

Herndon, VA

Telephone

+19722310035

Website

https://www.prisms.org/

Alerts

Be the first to know and let us send you an email when Prisms, Inc. posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Want your organization to be the top-listed non profit organization in Herndon?