The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
Jenny Whitman, Executive Director
Molly Goldsmith, Community Outreach & Events Manager
Zayne Herron, Social Media Assistant
Kari Storm, Communications Assistant
Kyle Tobar, Social Media Assistant
BOARD OF DIRECTORS
Rebecca Maher, President
KiOwana Phillips, Vice President
Destiny Bachman, Treasurer
Jon Fisher, Secretary
Tara Lewis, PhD
Kathy Kraus McClure, MD
Bobby Medow
Michael Mendenhall
Lucia Santistevan, MD
Marcia Abbott, Emeritus
Roland Bienvenu, Emeritus
Matthew S. Jo e, Emeritus
Jacob Licht, Emeritus
Vicki McCarrell, Emeritus
Lori omas, Emeritus
Monica Woodall, Emeritus
SCIENTIFIC ADVISORY BOARD
Kathleen Bogart, PhD
Oregon State University, Corvalis, OR
Gregory Borschel, MD
Riley Hospital for Children, Indianapolis, IN
Hollis Chaney, MD
Children’s National Health Services, Washington DC
Jacqueline Diels, OT
Facial Retraining LLC, McFarland, WI
Elizabeth Engle, MD
Boston Children’s Hospital, Harvard Medical School, Boston, MA
David Hunter, MD
Boston Children’s Hospital, Harvard Medical School, Boston, MA
Ethylin Wang Jabs, MD
Department chair of Clinical Genomics at Mayo Clinic
Bryn Webb, MD
Division of Genetics and Metabolism, University of Wisconsin School of Medicine and Public Health
Phillip McClure, MD
International Center for Limb Lengthening, Sinai Hospital of Baltimore, Baltimore, MD
Greg Osborne, DDS, FADI, Oakwell Dental, San Antonio, TX
Renee Roy Hill, M.S., CCC-SLP, COM® CLC
Crossroads Therapy Clinic, New Braunfels, TX
Alison K. Snyder-Warwick, MD
Chief of the Section of Plastic Surgery, University of Michigan
The Moebius Syndrome News is published two times per year. Articles, photographs, questions and comments are welcomed. The Moebius Syndrome News reserves the right to edit submitted material. Opinions expressed in the Moebius Syndrome News are each author’s and do not reflect that of the Moebius Syndrome Foundation or the Moebius Syndrome News. e newsletter is on the website at: www.moebiussyndrome.org
greetings,
Dear Friends and Supporters,
MOEBIUS COMMUNITY
It’s a pleasure to welcome and thank you for reading our spring newsletter. It’s great to take a moment to reflect and celebrate the community that makes our work possible.
In this issue, you will find a 2025 budget and impact report showcasing the real difference your generosity makes. From medical travel reimbursements to educational scholarships, event scholarships, and research funding, your support is changing lives in meaningful ways.
We also celebrate the incredible fundraisers held on behalf of our community, from Mulligans for Moebius and the Dublin Marathon to school-based events and social media campaigns. Every effort, big or small, moves us forward.
Inside, you will also find updates on how to become more involved, whether through donating, volunteering, or planning for the future through recurring or planned giving. Our regional coordinators and other volunteers continue to be the backbone of everything we do, and we are honored to recognize our generous donors who make it all possible.
Finally, we are excited to share the latest research updates, including registry news and a genetics webinar recording, as well as an introduction to our newest member of the Scientific Advisory Board, Alison Snyder-Warwick, M.D.
Thank you for your continued dedication to this community. We hope this newsletter leaves you feeling inspired, informed, and proud of what we are building together.
With gratitude,
Jenny Whitman Executive Director, Moebius Syndrome Foundation
We are pleased to announce that on January 12, 2026, KiOwana Phillips was unanimously elected by the Board of Directors to serve as Vice President of the Moebius Syndrome Foundation. “The greatness of a community is most accurately measured by the compassionate actions of its members.” — Coretta Scott King
I am deeply honored to serve as Vice President of the Moebius Syndrome Foundation. For over 20 years, I’ve been part of this community as a parent, advocate, regional coordinator, committee member, and board member. I’ve seen where we started, how far we’ve come, and I’m excited for where we’re headed together.
We serve a diverse and compassionate community of infants, seniors, and all ages in between, standing alongside families living with Moebius syndrome and honoring the lives of those we remember. Meeting individuals and families where they are, listening to their needs, and ensuring access to meaningful resources remains essential to our work.
I’m committed to leading with transparency, collaboration, and a steadfast focus on our mission. A few areas of focus are a workshop for teens of siblings with Moebius syndrome who have aged out of Sibshop, greater involvement in coordinating regional events, and innovative ideas and support for fundraising efforts. It is a privilege to continue serving this remarkable community, and I look forward to building an even stronger future together. — KiOwana Phillips
Matt Judkins, Capstone Creative, LLC
Rick Guidotti, Positive Exposure
Scan to read more about KiOwana!
NEWS A REVIEW OF THE 2025 FINANCIALS
Just like you track your income and expenses, the Moebius Syndrome Foundation carefully accounts for each dollar that is donated and spent. Guided by the vision of our Board of Directors, your feedback, and the core values driving our mission, a yearly budget is developed and tracked. The balanced 2025 final budget totaled $672,000 and included ongoing investments in programs that support people living with Moebius syndrome. These funds create more opportunities for connection, education, advocacy, and research, which are areas our community continues to rank as top priorities.
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RESEARCH 20% Research Grants Research Registry Research Symposium
MEMBERSHIP OUTREACH & ADVOCACY 8%
New Member Packets Awareness Campaigns Community Outreach
EDUCATIONAL SCHOLARSHIPS 4%
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$672,000 ACTUAL EXPENDITURES
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$195,901 INVESTMENT INCOME
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79% OF DONOR DOLLARS WENT DIRECTLY TO PROGRAM SUPPORT FINANCIAL OUTCOMES FOR 2025
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$523,306+ NET TOTAL INCOME
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ADDITIONALLY, THE BOARD PRIORITIZES A BUDGET THAT:
We earned a 2026 Candid Platinum Seal of Transparency! See what your donations help us accomplish: [insert unique sharable full profile link]
• Matches ongoing revenues with ongoing expenditures
Use this link for unlimited access to our profile. Keeping our profile up to date helps us gather support; enabling funders and donors to find us and learn about our impact.
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• Maintains adequate cash reserves to sustain operations during unforeseen circumstances
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• Prioritizes direct program spending to maximize impact for the Moebius community
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MEDICAL TRAVEL & PHILANTHROPY 1%
BOARD & GOVERNANCE < 1%
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• Ensures conservative investment strategies that protect the Foundation’s long-term assets
• Allocates resources based on community need, guided by Board, staff, and community insight
“Every dollar invested in our programs is a direct investment in the lives of individuals and families living with Moebius syndrome. This year, I am incredibly proud of the intentional, collaborative work our Board, staff, and community did together, listening carefully, identifying the greatest areas of need, and responding with purpose.
From important research and educational scholarships to our powerful conference in Salt Lake City and expanded community outreach, these programs reflect our unwavering commitment to this community. We are equally committed to being responsible stewards of every dollar entrusted to us, maintaining conservative investment and spending strategies that ensure the long-term financial health of this Foundation.
Our work is not just about today; we are not just funding programs, but building a future where every person with Moebius syndrome has the resources, connections, and answers they deserve for many years to come.”
– Jenny Whitman, Executive Director
your donations AT WORK
MAKING HEALTHCARE TRAVEL MORE ACCESSIBLE
For many in our community, accessing specialized medical care often requires traveling long distances. Thanks to your generous support, the Medical Travel Reimbursement Program ensures that financial barriers don’t stand in the way of essential treatment.
This donor-funded initiative provides both families and adults living with Moebius syndrome with up to $2,000 in reimbursement to help offset the costs of flights, lodging, and other travel expenses for medical appointments and procedures.
“ ank you again from the bottom of our hearts. It is so incredibly beautiful to have an organization dedicated to improving the lives of those with Moebius syndrome. We were completely shocked when we found out our baby was born with this condition, but we’ve grown so much as a family in the short time he’s been with us, and we know there is a bright future ahead for our boy. e clubfoot correction treatment is one more step towards giving him the best opportunity to thrive. – Sean & Sarah Fancher, parents of Rhys Fancher
Learn more and apply for the Medical Travel Program at https://bit.ly/MSFTravel
EMPOWERING FUTURE LEADERS
Your generosity is directly fueling the dreams of our community through the Moebius Syndrome Foundation’s Educational Scholarship program. Since its inception, this donor-supported initiative has proudly awarded 55 scholarships to students pursuing higher education. As we look ahead to 2026, we are excited to announce that your contributions will make it possible to award up to eight more scholarships. These awards do more than just ease financial burdens; they tell our students that their community believes in their potential and stands behind their academic ambitions. Thank you for making these life-changing opportunities possible!
Learn more about the Educational Scholarship opportunity at moebiussyndrome.org/ educationalscholarships
EXPANDING OUR UNDERSTANDING OF MOEBIUS SYNDROME AND TREATMENTS
We were thrilled to award two research grants in 2025.
•Learning from Adults and Parents of Children Living with Moebius Syndrome: A Rigorous Qualitative Study
This study, led by Principal Investigator Rachel Grob, Ph.D., explores the diverse lived experiences of people with Moebius syndrome and their navigation of the healthcare system. By prioritizing personal stories, researchers aim to bridge the gap between patients and providers to improve clinical relationships and primary care.This work is vital because it addresses quality-oflife issues such as public awareness and mental health that our community has identified as critical needs.
$50,000 distributed in 2025 to Rachel Grob, Ph.D., MA (primary investigator), and Jane Evered, Ph.D., RN (co-investigator), University of Wisconsin - Madison
•Leveraging Community and Professional Expertise to Accurately Characterize Early Communication Development in Children with Moebius Syndrome
The second research grant focuses on tracking and improving communication for young children, ages 2 to 5, with Moebius syndrome. By adapting standard developmental measures, researchers aim to create specialized tools that more accurately capture a child’s unique abilities.This study is important because it establishes clear language and communication milestones, providing families and clinicians with a roadmap to better support a child’s growth and target early interventions.
$50,000 distributed in 2025 to Elizabeth Norton, Ph.D. (primary investigator), Judith Licht, Ph.D. candidate (co-investigator), Megan Roberts, Ph.D., CCC-SLP (co-investigator), Northwestern University.
Learn more bout current and past research funded by the MSF at moebiussyndrome.org/researchfunding
research
MOEBIUS SYNDROME RESEARCH REGISTRY
The Moebius Syndrome Foundation Research Registry is more than just a data collection system. It’s an interactive participant-driven resource that can empower the Moebius community. Eligible participants include anyone around the world who has been diagnosed with Moebius syndrome. We hope the data collected leads to the development of new diagnostic and treatment options. Learn more at moebius.iamrare.org.
ALISON SNYDER-WARWICK, M.D. JOINS THE MOEBIUS SYNDROME FOUNDATION SCIENTIFIC ADVISORY BOARD
“ e Moebius community has been a tremendous resource for the families with whom I have had the privilege of working... it is an honor to contribute to the in nite wisdom of this group.”
–Dr. Alison Snyder-Warwick
We are pleased to announce that in 2025, Dr. Alison Snyder Warwick joined our Scientific Advisory Board.
Dr. Snyder-Warwick serves as Chief of Plastic and Reconstructive Surgery at the University of Michigan. Her main clinical focuses are pediatric plastic surgery and reconstruction for facial nerve disorders, corneal neurotization, treatment of facial clefts, reconstruction of brachial plexus birth injuries, and pediatric microsurgical procedures.
“Joining the Scientific Advisory Board was important for me. The Moebius community has been a tremendous resource for the families with whom I have had the privilege of working… and has supported my growth and learning as well! It is an honor to contribute to the infinite wisdom of this group to help decipher the complexities of available care now and in the future.
I hope that I can contribute to better understanding Moebius syndrome treatment options by helping to develop collaborative solutions and to understand the challenges that remain. It is awesome to be a part of the team dedicated to improving the lives of people with Moebius syndrome and their communities.
I have learned (and continue to learn) so much from this group…I hope that I can be of benefit to the Moebius community,” shares Dr. Snyder-Warwick.
GROUNDBREAKING GENETICS RESEARCH ON MOEBIUS SYNDROME
If you missed our recent special webinar, the recording is now available and well worth watching. Over the past decade, the Moebius Syndrome Research Consortium has partnered with individuals and families living with Moebius syndrome to better understand its clinical features and explore potential genetic origins. In the webinar, leading researchers Dr. Ethylin W. Jabs (Mayo Clinic), Dr. Elizabeth Engle (Boston Children’s Hospital), Dr. Irini Manoli (National Institutes of Health), and Dr. Bryn Webb (University of Wisconsin–Madison) presented key findings from this historic study. While the research answers many long-standing questions about the clinical and genetic landscape of Moebius syndrome, it also opens new ones, underscoring just how much more there is to discover. Scan the QR code to watch the recording.
HELP US BUILD OUR HEALTHCARE PROVIDER RESOURCES LIST!
One of the most frequent requests we receive is for recommendations for local, trusted specialists familiar with Moebius syndrome. To support our community, we are building a global directory of providers to support the full range of common symptoms associated with Moebius syndrome, from speech and feeding, dental and sleep health, to orthopedic treatments, surgery, and mental health, based on your personal experiences. While the Moebius Syndrome Foundation does not endorse specific providers, we want to make it easier for families to find the care they need. If you have a provider you’d like to recommend, please fill out our short form. Your input will help us grow an accessible online resource for everyone in our community.
EYELID CLOSURE IN MOEBIUS SYNDROME
Gregory Borschel, M.D., provided a research update on Eyelid Closure in Moebius Syndrome on April 1, 2026 via a recorded webinar. Grant funding for this research was approved by the MSF in 2020. Dr. Borschel is Chief of Plastic Surgery, Riley Hospital for Children in Indianapolis, IN. He is also an active member of the Moebius Syndrome Foundation Scientific Advisory Board. You can view a copy of the recorded research update at moebiussyndrome. org/facial-paralysis-information.
thank you
Sunshine Zuniga
IN MEMORY OF ALEXANDRIA C. ZUNIGA
Anonymous
William Goeldner
Peter L. Profumo
IN MEMORY OF ALICE PROFUMO GOELDNER
Jolene Eriksen*
IN MEMORY OF CELESTE JASMYN HAYDEN
Maryke Moffitt
IN MEMORY OF DAVID C. MOFFITT
Megan Brown
Dawn Christensen
Marina and Felix Couchman
Ryan and Lisa Guck
Brooke Igl
Nolan Kemp
Nicholas J. Mahlberg
Shannon McHugh
Matthew Michel
Karina Nelson
Edward Spetch
John Stover
Katie Trevina
Jennifer Whitman IN MEMORY OF DECLAN YOUNGDALE
Jane Katz
IN MEMORY OF JOSHUA HIX'S NEPHEW
Jim and Glenda Lush
IN MEMORY OF KAYLEE GRACE ROBERTS LUSH
Vicki McCarrell
IN MEMORY OF MARY DILLNER
Joan M. Coddens
IN MEMORY OF MCGOWANS
Jean Graham
Susan Conway IN MEMORY OF MICHAEL F. GRAHAM
Susan Cunningham
Laraine Drabant
Gene and Donalda Kolbeck
Bob Peterson
Sallyann Marino Ryder
Carol Scotton
Anthony and Christine Smolen IN MEMORY OF PHYLLIS WUEBBEN
Phyllis Healy
Lisa MacIntyre
Barbara Mennel
Megan Raye
Bill Tierno IN MEMORY OF STEVEN T. SIMMONS
The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. All listed donations were made September 17, 2025 - March 15, 2026.
Carole Perry IN HONOR OF MARCIA AND NATALIE ABBOTT
Jennifer Whitman IN HONOR OF NATALIE ABBOTT
Anonymous IN HONOR OF ALEXI
Basil Ninenger IN HONOR OF AMÉLIE
Molly Goldsmith IN HONOR OF ATTICUS
Destiny Bachman*
Katie Bachman*
Emily Long IN HONOR OF HAMILTON BACHMAN
James and Becky Butts
Dave and Cheryl Banning IN HONOR OF KIMBERLY BANNING
Betty Banner
Marian and Frank Setzman
Jenny Whitman
Anonymous IN HONOR OF BEN BECKER
Matthew and Rebecca Becker
Alan Guttman IN HONOR OF BEN AND HENRY BECKER
James and Teresa Durand
Holly Kowai
LeAndrea Williams IN HONOR OF HARRISON BERGE
Erica Klauber IN HONOR OF LAURA BERGE
Anonymous IN HONOR OF MATT BERGE
Kristen Bonasso IN HONOR OF FAYE BONASSO
Chelsea Oden Weatherford
Nancy Buck* IN HONOR OF AVA RAE BUCK
James Pankraz IN HONOR OF RAY CHARLES
Clark Construction Group IN HONOR OF JEFF CHEEK
Rebecca Cheney IN HONOR OF ANNA CHENEY
Anonymous IN HONOR OF JACOB CRAWFORD
Angela DeLisa*
IN HONOR OF FINN DELISA
Susan D. Osborn
IN HONOR OF JAN FISHER
Alice Frecon
IN HONOR OF MATTHEW FRECON
Stacey Fulmore
IN HONOR OF ABBEY FULMORE
Jason Arlow
Joyce Barnes
Courtney Hammond
Ellen Hamrick
James Krajnik
Jenny Whitman
Kevin Zauel
Anderson, Eckstein & Westrick IN HONOR OF GALACTIC GALA FUNDRAISER
Katie Amato
Grace Bach
Jeff Bain
Kelsey Bottari
Bounce! Family Entertainment Center
Stephanie Cascio
Helen Cohn
Eleanor Deneroff
Kristin Driscoll
Jeannine Elena*
Meredith and Stuart Frankel
Jennifer and James Garvey
Cynthia Ricci
Melville Deli
Polsky Sport and Entertainment IN HONOR OF ADDISON GARVEY
Hannah Barry IN HONOR OF DECLAN GARVEY
Anonymous IN HONOR OF REESE HUNTER
Meredith and Bruce Jones IN HONOR OF ADDY JONES
Anna L. Klein School IN HONOR OF JOSIAH
Shane Cahill IN HONOR OF DJ KELLY
Tara and Ken Koehnlein IN HONOR OF KRAIG KOEHNLEIN
Anonymous
Kerrin Ast
Larry and Miriam Kramer IN HONOR OF GABRIEL KRAMER
Amanda and Keith Davis IN HONOR OF ELIZABETH LAWRENCE
David and Windi Sims
IN HONOR OF THOMAS STORY LEVELY
Tina Neiders IN HONOR OF DALLAS LEWALLAN
Ronn Medow
IN HONOR OF MIRIAM LICHT
Nancy Lueckhoff IN HONOR OF ALYSSA LUECKHOFF
A special note of thanks goes to our Sustaining Members who have committed to making monthly contributions. They are marked with a * (star) by their names. Also, we are very grateful to the donors who choose to remain anonymous and are not listed below.
WE ARE INCREDIBLY GRATEFUL TO OUR DONORS. EACH GIFT HELPS US TO PROVIDE A BETTER FUTURE FOR INDIVIDUALS WITH MOEBIUS SYNDROME.
Scan QR code to donate online at: moebiussyndrome.org/donate/ paypal.me/moebiussyndrome
Mail a check to:
Moebius Syndrome Foundation 1312 17th Street, #976 Denver, CO 80202
2026 Platinum Seal outreachtoolkit
Please let us know if your gift is in honor or memory of someone.
Carolyn Case
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Shae Galloway
Molly Goldsmith
Tracy Waxon
Braintree
Paul and Kathy Brandner
Michael Byrne
Kathryn Kraus McClure, M.D.
James McClure
Susan Scotten*
Share
IN HONOR OF MAGICAL MOEBIUS PUMPKINS FUNDRAISER
Anonymous
Beth Battina
Jane Battina IN HONOR OF CHARLIE MCCANTS
Jennifer Whitman IN HONOR OF KATHRYN KRAUS MCCLURE
Sandra Hartung
IN HONOR OF EMMA MCGOWAN
Angela Coakley*
IN HONOR OF MEGAN MENARD
Grace Bach
Jeff Bain
Helen Cohn
Eleanor Deneroff
Bruce Elstun
Howard Fisher
Carly Gershone
Serena Goldsmith
Stacey and Dave Hiatt
Jamie Kristofco
Robert Martin
Megan McBryde
Tom Paper
Cass Robbins
Meggan Sandoval
Amy Schuster
Regina Silvestain
Lisa Thomas
Elizabeth Walker
Marilyn Weinhouse IN HONOR OF MOVES FOR MOEBIUS CO
Jessica Benjamin
Jan Fisher
Jackie Flanagan
Lawrence Lacerte
Tina Neiders
Kathleen Parker
Desiree Peters
Graham Smith
Carol Van Bramer
IN HONOR OF MOVES FOR MOEBIUS ID
IN HONOR OF MOVES FOR MOEBIUS TX
Destiny Bachman*
Jon Fisher
Tara Lewis, Ph.D.
Kathryn Kraus McClure, M.D.
Robert Medow
Rebecca Maher
Michael Mendenhall, Esq.
KiOwana Phillips
Lucia Santistevan, M.D.
IN HONOR OF MSF COMMUNITY
Rosemarie and Joseph Keebler
Kirsten Slawson
IN HONOR OF MATHIAS SANTANA
Lee Garfinkel
IN HONOR OF MARIAN & FRANK SETZMAN
William V. Erickson
IN HONOR OF LISA AND KEVIN SMANT
Laura Lockie
IN HONOR OF IVY STEWART
Carlos Torres*
IN HONOR OF LUCAS MIGUEL TORRES
Tom Bassarear
IN HONOR OF ELENA TRECANAO
St. Raymond Elementary School
IN HONOR OF LUIS VELAZQUEZ
Inspire Patient Outcomes Team
IN HONOR OF EASTON WASHER
Mike and Kelly West
IN HONOR OF CARTER WEST
Jennifer Bossen
Robert Medow
IN HONOR OF JENNY WHITMAN
Cindy White
IN HONOR OF JOSIE R. WOODWARD
Lisa Amedeo
Frankie Bailer
Bank of America Employee Giving
Colin Bartlett
Adrian Berger
Larie Bonds
Steve and Sarah Boros
Gregory Borschel, M.D.*
Benevity Community Fund
Patricia Cardoso
Mark Christensen
Emily Cicconi
Angela Coakley*
Alexix Cohen-Pena
Mary Lynn Crossen
Ron and Kim Delco
Patricia Ellis
Jonathan Fries
Robert Gellman
Give Lively Foundation
Anthony Gonzalez
Valerie Grumm-Niles
Nicolas Haber
Justin Hopple
Alan and Dana Hyams
Jewish Community Fund
Julie Kirchberg*
Diane Lapham
Jan and Frank Law
Dallas Lewallen
Jamil Lewis
Jacob Licht
Jeff and Peggy Liddle
Cheryl Manning*
Sam Mauro
Arthur and Katherine McCaughan
Tina Michael*
Tina Mohanty
David and Nancy Moore*
PayPal Giving Fund
Paul and Kristine Santilli
See’s Candies
Stephany and Dan Smith
Joshua Smith
Christina Smith
Mark J. Sullivan*
Annap Tietje
United Way Tucson and Southern Arizona
Scott Wales
Bill Weaver
Drs. David G. Hunter and Constance E.
West Brian Wilson
Shelby Wright Howard*
SPOTLIGHT EVENT
MOEBIUS SYNDROME AWARENESS & FUNDRAISING
Our Amazing Fundraisers
Thank you to everyone raising funds and awareness for the Moebius community.
GOLF TOURNAMENT
COMMUNITY FUNDRAISERS
JULY 25, 2026
Mulligans for Moebius
Las Vegas, NV
Hosted by the Moebius Syndrome Foundation
Lead organizer: Michael Mendenhall
IDAHO
Idaho Moves for Moebius
Bowling event & fundraiser
Dallas & Lindi Lewallen
$9,023 RAISED
NEW YORK
Bouncing for Kindness
In honor of Addison Garvey
$3,378 RAISED
NEW YORK
St. Raymond Elementary
In honor of Luis Velazquez
$1,040 RAISED
Facebook Fundraisers
COLORADO
Colorado Moves for Moebius
Jan Fisher
$5,465 RAISED
MICHIGAN
The Galactic Gala
Matt Berge
$1,871 RAISED
PENNSYLVANIA
St. Robert / St. John
Dress Down Awareness Day
In honor of Jackson Robert
$950 RAISED
Register & Learn More mulligansformoebius.com
IRELAND
Dublin Marathon Fundraiser
Shane Cahill
In honor of DJ Kelly
$3,090 RAISED
TEXAS
Texas Moves for Moebius
Tina Michael
$1,642 RAISED
PENNSYLVANIA
Magical Moebius Pumpkins Fundraiser
Kathryn Kraus McClure
$1,311 RAISED
We appreciate the many birthday and MSAD fundraisers raised through Facebook — every contribution makes a difference. Thank you!
WAYS TO
give
YOUR GENEROSITY MAKES A DIFFERENCE.
Donations to the Moebius Syndrome Foundation provide information and support to individuals with Moebius syndrome and their families, promote greater awareness, and advocate for scientific research to advance diagnosis and treatment.
DONATE ONLINE
Make a secure gift at moebiussyndrome.org/donate. One-time and recurring giving options available.
Send a check to: Moebius Syndrome Foundation 1312 17th Street #976, Denver, CO 80202
PLANNED GIVING
Leave a lasting legacy by including the Foundation in your will or trust. Every planned gift strengthens our mission for generations to come.
• Bequests in your will or living trust
• Beneficiary designations (IRA, life insurance)
• Charitable remainder trusts
Contact us: info@moebiussyndrome.org
DONATE STOCK
Scan to learn more about ways to give!
Put Stock in Something That Matters! Did you know that when you donate appreciated stock, you may avoid the tax on the gain while deducting 100% of the value of the contribution? That makes stock gifting one of the most tax-advantaged ways to give.
Please contact us if you would like more information on how to send stock donations to our investment accounts. Email info@moebiussyndrome.org or call (844) 663-2487 ext. 703.
DONOR-ADVISED FUNDS
Make a gift from your donor-advised fund (DAF) for a convenient, high-impact way to give.
• Tax deduction taken when you contribute to the fund
• Recommend grants to the Foundation at any time
• Accepted from Fidelity Charitable, Schwab, and more EIN: 13-3753992 • Use DAF Direct on our website
FUNDRAISE ON OUR BEHALF
Host an event, or create a fundraiser on Facebook or Instagram for the Foundation. Email events@moebiussyndrome.org to get started.
Facebook: Log in, create a fundraiser, set a goal and date, and share with your network.
Instagram: Start a fundraiser from any post, active for 30 days. Extend or end at any time.
CORPORATE MATCHING
Many employers match charitable donations and volunteer hours dollar-for-dollar — instantly doubling your gift at no extra cost.
How it works:
1. Make your donation to the Foundation
2. Submit a matching gift request to your employer
3. Your company matches your gift — your impact doubles!
Volunteer Hour Matches
Thousands of companies also match volunteer hours from team members, retirees, and employee spouses. Use this free tool to see if your employer offers donations and volunteer hours matching! https://moebiussyndrome. org/waystogive/corporate-matching/
ROUND UP FOR GOOD USING WALMART’S SPARK GOOD!
Walmart’s Spark Good Round Up enables shoppers on Walmart.com or the Walmart app to donate to charity by rounding up purchases to the nearest dollar. Customers can select the Moebius Syndrome Foundation to receive their spare change, with 100% of the donation being tax-deductible. This program helps qualified charity organizations like ours raise funds effortlessly.
501(c)(3) Tax-Exempt Organization • EIN # 13-3753992 • Contributions are tax-deductible to the full extent of the law.
On January 24, 2026, something beautiful happened. From Denver to São Paulo, from Oslo to Manila, families and friends paused to shine a light on Moebius syndrome and, in doing so, reminded each other that no one walks this journey alone.
“Seeing so many people from our community, and also from far away, comment and share our family’s photos and messages makes us feel like we are not so alone.”
— Michelle, United States
This year, celebrations spanned 26+ countries, with hundreds of photos shared from across the world. One awareness day. So many lives touched.
Thank you to every family, advocate, and friend who raised their voice and shared their light.
Moebius Syndrome Awareness Day Celebrating Around the World
Every day is a good day to celebrate the Moebius syndrome community and spread awareness! Scan the code to learn more about how you can get involved or start planning your next awareness day event.
1312 17th Street #976
Denver, Colorado 80202
(844) 663-2487 or (844) MOEBIUS info@moebiussyndrome.org
IN-PERSON EVENTS
Date Name of Event
May 9 e Aggressively Kind Benefit Concert (Columbia, Maryland)
June 13 Arizona & New Mexico Regional Event - Details TBD
July 25 Mulligans for Moebius Golf Tournament (Henderson, Nevada)
July 25 Pirates Baseball Game (Pittsburgh, Pennsylvania)
VIRTUAL EVENTS
Date
Name of Event
May 13 Mother’s Day Panel/Chat
May 14 Grief Support Group (every other Thursday, year-round)
June 2 Just for Adults Chat
June 10 Just for Spanish Speakers Chat
June 18 Father’s Day Get-together
July 12 Just for LGBTQIA+ Chat
Sept 13 Just for Adults Chat
MAY - SEPTEMBER SAVE THE DATE MOEBIUS SYNDROME FOUNDATION CONFERENCE PITTSBURGH, PA • JULY 22 - 25, 2027
We hope you can join us at an upcoming event! Follow our online calendar for the latest event updates. https://moebiussyndrome.org/events/
