MWSF Quarterly Newsletter: April 2025
Catch up on the latest updates from the Mowat-Wilson Syndrome Foundation in our April 2025 Newsletter — including upcoming events, family stories, and ways to get involved.
Read now: https://mailchi.mp/mowat-wilson/mwsf-april-2025-newsletter-13845971
President’s Message
Hi everyone! As President, the subject of my message in this newsletter is you! Our community is the best! The biggest reason we are having another international conference in 2026 is your enthusiasm, commitment and dedication expressed at our 2024 conference. The Webinars we are now regularly putting on are being done with the support of the Community Advisory Board, and are a response to your desire for more information, particularly with regard to the new and ongoing research being undertaken to help our kids. In this regard, the new additions to our Board have become invaluable members of our team, particularly in the research and fundraising areas. Please look for big news coming in the next few weeks with regard to the on-line auction which we will be putting on later this spring. I guarantee that it will be great!
So as a representative of the Board, I want to express my sincere gratitude for your efforts and participation in MSWF programs. You are our strength. Whether it is research, education or fundraising, we know that you and your families are the heart and soul of this Foundation.
Paul Jacobi
President, Mowat-Wilson Syndrome Foundation
Parker Foundation Request
The MWS Foundation recently received a grant from the Parker Foundation. The grant will provide funding to update and expand family informational and welcome packets. Part of this work will be to create a road map for families with newly MWS newly diagnosed kids. The work will be done by the MWSF Education Committee. We are excited to receive this grant so that we can continue our mission of enhancing the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.
CAB Update
At their last meeting in November, they discussed several next steps. Here’s where those initiatives stand:
-
Family Mentorship & Resource Support
The CAB proposed creating a mentorship resource to help respond to incoming questions from newly diagnosed families. Since then, we received one inquiry in late January. We were able to provide guidance and relevant resources; however, we have not received any further follow-up at this time. -
Wisdom Wednesdays
As part of our continued content efforts, the CAB submitted one “Wisdom Wednesday” contribution in February, with more ideas being explored for 2025. -
Social Media Support
In late November, the CAB drafted and submitted a series of social media post ideas to support ongoing MWSF outreach and engagement. -
Future Webinars
In February, the CAB shared four potential webinar topics and corresponding outlines to help shape future Foundation learning sessions.
The Board has also been actively working on defining CAB goals and finalizing a CAB Charter, which will help guide recruitment efforts and clarify the future shape of the CAB—how many seats will be available, who should apply, and how the CAB fits into the broader mission of the Foundation.
We appreciate the continued support and patience of the community as we collaborate with the Board to define the next chapter for the CAB and how it can best serve the MWSF community.
MWSF Research Update Webinar
If you missed the live MWSF Research Update Webinar on March 19, don’t worry—the full recording is now available!
During the webinar, leading researchers and clinicians shared exciting updates on current studies, recent breakthroughs, and what’s on the horizon for Mowat-Wilson Syndrome research. It was an insightful event filled with hope, progress, and a deeper understanding of the work being done to support the MWS community.
Whether you’re a parent, caregiver, researcher, or supporter, this is a must-watch!
Thank you to everyone who joined us live—and a special thank-you to our presenters for sharing their time and expertise.
MWSF Auction: Save the Date!
Mark your calendars for the MWSF’s online auction: Bid for a Brighter Tomorrow, happening May 23–26, 2025, via the Givebutter app!
This special fundraising event is your chance to support the MWSF community while bidding on exciting items like gift cards, travel experiences, and more.
Important Dates:
-
May 16, 2025 – Item preview and registration open
-
May 23 at 6PM EST – Bidding begins
-
May 26 at 6PM EST – Auction closes
Every bid makes a difference. Join us and help build a brighter tomorrow for individuals and families affected by Mowat-Wilson Syndrome.
Family of the Month
Be Our Next Family of the Month!
We want to celebrate YOU! Share your family’s unique story with the MWSF community and inspire others by being featured as our Family of the Month!
How to Apply:
Fill out the submission form by clicking the button below
OR
Email your story to Adero at Adero@mowat-wilson.org
Let’s continue to connect, share, and support one another in our journey with MWS. Don’t wait—submit today!
![Representation of ZEB2 gene exons and introns with encoded protein structure with six domains having known protein functions and multiple non-domain regions of linker polypeptides. Image provided and modified from St. Peter et al. [8] with permission.](https://mowat-wilson.org/wp-content/uploads/2025/03/Screenshot-2025-03-28-at-9.11.48 AM-80x80.png)