FA L L 2 0 2 6
WWW.MOEBIUSSYNDROME.ORG
NEWS
“I want to exist in a world where my voice is a sword that fights on behalf of children who deserve more than what they have.” – Heaven Baylor
A Season of AWA R E N E SS , A DVO C ACY, AN D CO N N EC T I O N
Don’t miss Heaven Baylor’s “Trial by Fire: Moebius Syndrome, Social Work, & Law School” on page 4, part of our ongoing efforts to raise awareness and support advocacy efforts happening throughout our community.
IN THIS ISSUE Greetings & Updates from Leadership. . .......... 2
Events.. ............................................................. 5
Research & Science. . ........................................8
Raising Awareness........................................... 3
Back to School.................................................6
Fundraisers We Love.......................................9
Trial by Fire: Moebius Syndrome, Social Work, & Law School. . ............................4
Resources . . ...................................................... 7
Donor Gratitude. . ....................................... 10-11
OUR MISSION 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 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. Joffe, Emeritus Jacob Licht, Emeritus Vicki McCarrell, Emeritus Lori Thomas, Emeritus Monica Woodall, Emeritus
greetings,
MOEBIUS COMMUNITY
Dear Friends,
For many families, the hardest part of a Moebius syndrome diagnosis is not the medical information — it is the feeling of being the only one. That is why we are glad to open this issue with Moebius Connections. The Foundation has been connecting people since our earliest days in 1994, and our more formalized peer program has quietly made introductions within this community since 2022. Over the past year, we rebuilt it with a clearer process, more thoughtful matching, and volunteers ready to walk alongside you. It is open now to anyone seeking a friend or mentor who truly understands. The pages that follow show that same commitment at work in different forms: awareness efforts that change how the world sees us, scholarships that open doors, research that moves our understanding forward, fundraisers and volunteers who give generously of their time, and donors whose support makes all of it possible. Whatever brought you to this community — your own diagnosis, your child’s, or a friendship that led you here — you belong. Thank you for being part of it. With gratitude, Rebecca Maher, President
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 Phillip McClure, MD International Center for Limb Lengthening, Sinai Hospital, 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 Bryn Webb, MD Division of Genetics and Metabolism, University of Wisconsin School of Medicine and Public Health Rhonda Robert, PhD, Emeritus Member Ronald M. Zuker, MD, Emeritus Member MOEBIUS SYNDROME NEWS newsletter@moebiussyndrome.org
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. The newsletter is on the website at: www.moebiussyndrome.org
YOUR BOARD OF DIRECTORS AT WORK: A 2026 SNAPSHOT Everything MSF offers this community is shaped by a volunteer board that gives its time all year long. Here is what that work has looked like in 2026. Board meetings. The board meets by video four times a year and gathers in person every year. This October, the full board travels to Pittsburgh for a weekend of strategic planning focused on how MSF can best support the Moebius syndrome community. 2027 conference. Board members are deeply involved in planning next year’s national conference in Pittsburgh, from the largest decisions down to the smallest details. Financial stewardship. The board approved the 2026 budget in January. The Finance Committee reviews financial reports monthly, with a full board review each quarter. In March, MSF engaged an independent auditing firm to complete a full audit of fiscal year 2025. The audit returned an unmodified opinion, the strongest result available, confirming that our financial statements are fairly presented and free of material misstatement. The board reviewed the findings and approved both the audit and the Form 990 filing. Membership. In August, MSF launched Moebius Connect, a free app that gives members easier access to resources and to one another. The board also guided the evolution of our mentorship and friendship program, relaunched in September as Moebius Connections and coordinated by board members. Philanthropy. Every board member is expected to support MSF’s fundraising. This year’s campaigns included Making A Difference for Moebius each April and Moves for Moebius in September and October. Board member Michael Mendenhall also organized Mulligans for Moebius, a charity golf tournament in Las Vegas that raised more than $40,000. Additional initiatives are planned before year’s end. Research. The board continues to support the Moebius Syndrome Foundation Research Registry, launched in 2025, and led this year’s effort to update the definition of Moebius syndrome on the National Organization for Rare Disorders (NORD) website – www.rarediseases.org. NORD has since asked a board member and a Scientific Advisory Board member to work with OpenEvidence AI so that families searching for answers find accurate ones. Planning begins soon for the 2027 Scientific Research Symposium and CME event. You can learn more about individual board members at https://moebiussyndrome.org/leadership/. 2 • MOEBIUS SYNDROME FOUNDATION
RAISING
awareness
If you have Moebius syndrome, or you love someone who does, you already know how much a single interaction can shape a day. You have seen what it looks like when someone is dismissed, overlooked, or made to feel less than. You have also seen what changes in a person when they feel seen, respected, and included. That shared experience is one of the things that connects our community. The other is what we do with it. We know more change is needed, and together we are working to make it happen. We would like to highlight some of our community members who have worked to raise awareness about Moebius syndrome in the last few months. This isn’t everyone, as we know there are many people raising awareness in many places and in many ways. Thank you to each of you! David Freedman wrote an article called The Importance of Being Assertive, which speaks to the importance of learning to be assertive and realizing he didn’t need every answer up front. He only needed to recognize that “I was enough,” and trust that the tools for speaking up would come with time. You can read David’s article and blog at https://freedmanonthego.com/ Dallas Lewallen raised awareness about Moebius syndrome at the annual Wagon Days Parade in Ketchum, ID during Labor Day weekend. Dallas and family walked down Sun Valley Road near all the fun prior to the parade and spoke with many people about Moebius syndrome. Rhyan Nelson advocated for her ability to take a driver’s course, adapted driving controls, and now has her license. Rhyan is a great example of overcoming obstacles when told she couldn’t do something. Moni Williams- Moni Williams received a certificate from the Detroit Mayor for raising awareness about Moebius syndrome. Congratulations to Moni!
COMMUNITY EMPOWERMENT GRANTOPEN THROUGH OCTOBER 30, 2026! If you have a great idea that would help us fulfill our mission by expanding advocacy, awareness, or resources that would benefit the Moebius syndrome community, please apply. One or more people are awarded up to $2,000 each year. Learn more at https://moebiussyndrome.org/communitygrant/ This album is rooted in empowerment. In dancing through the pain, transforming challenges into strength, and finding joy in the places where it’s often overlooked. With your support, this project has the power to reach people who need to feel seen, understood, and uplifted. ~Austin Halls, 2025 Community Empowerment Grant recipient Austin’s album, DISIBILI-TEA is available for streaming on Spotify and can be purchased and downloaded from Amazon.com.
Shelby Welch- July is Disability Pride Month, and Shelby Welch marked it by sharing a personal blog about what living with a disability has felt like for her this summer. She reflects on a semester where illness, daytime sleepiness, and communication barriers left her running on empty, and on what it took to finally request new accommodations. She writes candidly about being her own harshest critic: the instinct to push through, the belief that asking for grace means failing, and the discovery that disability burnout is real. She does not wrap it up with a neat answer. There is no single way to be disabled, and she is still learning what it looks like for her.
“There is no guide on how to be disabled because it means something different to everyone in the disability community.” READ SHELBY’S BLOG BY SCANNING THE QR CODE: https://shelsjourney.wixsite.com/ makeupdiamond/post/how-to-be-disabled
FALL 2026 NEWS • 3
TRIAL BY FIRE: MOEBIUS SYNDROME, SOCIAL WORK, & LAW SCHOOL
“Why do you sound like that?”
“Can she shut up? She’s annoying.”
“You sound stupid.”
By Heaven Baylor
Standing in front of three mock judges for 1L moot court at the University of Texas School of Law, these words, and the feelings they evoked, were unavoidable, even as I stared down at my oral argument outline. Consolidating my anxiety into a tidy box is an ongoing battle. While many people fear public speaking generally, I am deeply familiar with the shock and confused stares of people who expected “normal” and instead spoke to me, someone with Moebius syndrome, a neurological condition that impacts the cranial nerves. In my case, my tongue and bottom lip are the primary areas affected. My tongue is mostly paralyzed. I battle my anxiety, forged through years of unkindness, bullying, and fighting for my place in spaces people thought I didn’t belong. I know, as simply a matter of fact, that I sound different. However, when I talk, I hear a normal voice. Cameras and recordings expose the truth of the matter. Ever since I first heard my voice recorded, I’ve been keenly aware of it. I know that my mouth moves differently than yours, and my face, though not as obviously paralyzed as some of my community members’, looks a bit different in its own small ways. My body can’t accomplish all the same things a “normal” body can accomplish.
I know what it feels like to be
underestimated,
and I went through many phases growing up where I had to fight to
make sense of myself and my place in the world.
My journey to law school and my desire to advocate for other people were forged in metaphorical fire. I know what it feels like to be underestimated, and I went through many phases growing up where I had to fight to make sense of myself and my place in the world. Law school, so far, has been a similar experience. The irony of my desire to advocate for others is that my voice is one of my greatest insecurities when I’m around people I don’t know well. As I’ve gotten older, I’ve spent lots of time trying to accept myself for what I am. Over time, I’ve gotten really good at handling other people’s thoughts and expectations of me too. As a social worker, you hear
4 • MOEBIUS SYNDROME FOUNDATION
a lot of stuff from a lot of people. And some people have no filter. That experience was invaluable to me before starting law school, though, and studying and practicing social work taught me how to communicate in these situations. That being said, doing the actual work of becoming an advocate is terrifying. I hear the voices that have built up over the years, the self-doubt, the imposter syndrome, and the deep-seated feeling that I ended up somewhere I don’t belong. I’m not the best public speaker, but I want to be better. I want to exist in a world where my voice is a sword that fights on behalf of children who deserve more than what they have. But along the way, I have to remind myself that it isn’t my job to be someone else: a person who is more confident, more “normal,” or more intelligent. I am who I am, and the only way I will get better at the things I am bad at is if I force myself to be uncomfortable. Law school is a trial by fire. It’s so challenging partly because a room full of people who are used to being towards the tops of their classes are suddenly competing against each other for everything, and someone has to lose. It’s the nature of the game due to the curve, and all activities have limited slots. If you’ve put stock in your academic abilities as part of your identity, what happens when suddenly you’re in an environment where you can’t rely on that anymore? The work of becoming a lawyer has been enjoyable. It’s almost been emotionally grueling, especially considering the fact that life has thrown its own curveballs that many of my classmates don’t have to deal with. I’ve also realized that I don’t know myself as well as I thought I did. I’m not sure what exactly I want for myself. More importantly, I’m starting to wonder where I fit in and whether my goals are still the same. But either way, I will keep pushing through. I know that the Moebius community can do hard things. Growth happens in discomfort, and I’ve gotten better at learning how to sit with those feelings. In the spring, I will take trial advocacy, an entire class focused on 1.) improving your presence as an advocate and 2.) teaching trial skills. It is the one thing I know I really need to do, but I am scared to do it. Being judged based on my greatest insecurity sounds deeply uncomfortable. That being said, if any young folks with Moebius are considering professional careers of any kind, I encourage you to take the leap. It can be unsettling at times, but we need more representation in these fields, and no one understands clients better than those who have shared similar lived experiences.
UPCOMING
events
NOVEMBER
5 & 19 NOVEMBER
DECEMBER
Grief Support Group
7
NC Kingfest and Group Dinner Regional Event
NOVEMBER
Pumpkins with Purpose – Kentucky & Tennessee Regional Event
15
For more detailed information about MSF events, please scan the QR code to visit our events page.
1
DECEMBER
6
JANUARY
24
Giving Tuesday
Just for Adults with Moebius Syndrome Chat
Moebius Syndrome Awareness Day (MSAD)
Keep a lookout for updates about MSAD events in January! Our virtual gatherings (Just for Adults, Just for Adults: Midlife & Beyond, Spanish, LGBTQIA+ and Grief Support Group) will continue on a regular basis in 2027.
CALL FOR SPEAKERS Moebius Syndrome Foundation Conference
Deadline to apply is November 6, 2026 Contact conference@moebiussyndrome.org with any questions.
FALL 2026 NEWS • 5
BACK TO
school
Students in the Moebius syndrome community are back in the classrooms and accomplishing great things. We are pleased to highlight outstanding students who received Moebius Syndrome Foundation Educational Scholarships this year, as well as a few students of all ages who are ready for the school year! This last May, we were proud to recognize eight outstanding students who have worked hard to advance their education and pursue their goals. Each was awarded a $3,000 scholarship to support the 2026 fall semester’s tuition and fees.
BACK-TO-SCHOOL This August and September, students from all walks of life headed back to the classroom. The MSF received many requests for information and resources from parents sending their children back to school. Website resources are available year-round that can be shared with the entire school faculty. You can learn more about these resources by visiting our website at https://moebiussyndrome.org/school-resources-2/
We wanted to share these photos of three students heading to Pre-K, Middle School, and last year of college! We wish everyone a great school year.
6 • MOEBIUS SYNDROME FOUNDATION
RESOURCES TO SUPPORT THE MOEBIUS SYNDROME COMMUNITY Learn more about these and other resources at moebiussyndrome.org.
ADVOCACY & AWARENESS
FINANCIAL RESOURCES
• Employment Resources (available now)
• Community Empowerment Grant (apply now - October 31, 2026)
• Moebius Connect App (download for free at Apple Store and Google Play Store)
• Conference Scholarships (opens next in early February 2027)
• Newsletters (sign-up now)
• Educational Scholarships (opens next in January 2027)
• Research updates and information (learn more now) • Research Grants (also financial resources) • School Resources (available now)
• Free & Low Cost Dental Resources (available now) • Research Grants (opens next in 2027) • Travel Reimbursement (apply now)
EDUCATION
CONNECTION
• Materials to share information with Healthcare Providers and Educators
• Conferences (next national conference will be in Pittsburgh, PA on July 22-25, 2027)
• New Member Packets (available to new parents of a child with Moebius, and adults with Moebius now)
• Events (check out upcoming events now)
• Research Updates and Articles
• Social Media Support Groups (join our private Facebook group: The Home for the Moebius Community now)
• Webinars and virtual events
• Moebius Connections (sign-up today)
Please contact us if you have any on how to access any of the resources listed above. info@moebiussyndrome.org or call (844) 663-2487 ext. 704
THE ROBERTS FAMILY SHARES THEIR EXPERIENCE WITH THE MEDICAL TRAVEL REIMBURSEMENT PROGRAM Jackson is five years old living with Moebius syndrome in Bucks County, Pennsylvania. When he was just two years old, we started traveling to Boston Children’s Hospital to meet with Dr. Hunter. We have traveled to Boston once or twice a year for surgery, pre-and postop visits, along with regular routine eye exams. The Moebius Syndrome Foundation reimbursement program took the financial burden off our hands this trip. We are forever grateful. Thank you so much to the Moebius Syndrome Foundation! Our hearts are full. Jackson’s appointment went well, and we will continue to offer him every opportunity. We are proud to be involved with such an incredible organization and the Moebius community! Dr. David Hunter and Jackson Roberts Photo credit: Patricia Roberts
The Roberts Family
FALL 2026 NEWS • 7
research
UPDATES
MOEBIUS SYNDROME FOUNDATION TO SUPPORT THE OPENEVIDENCE AI PROJECT Families often find themselves explaining Moebius syndrome to the very clinicians treating it. That is why it matters where doctors go looking for answers. The National Organization for Rare Disorders (NORD) has been helping families and physicians find information about rare disorders for over 40 years. Their first textbook, “A Physician’s Guide to Rare Diseases,” was transformed into an online Rare Disease Database and has been one of the most widely used references of its kind. This database will once again be updated. On March 12, 2026, the National Organization for Rare Disorders (NORD) officially partnered with OpenEvidence AI. Often described as a “ChatGPT for doctors” but with rigorous citations, OpenEvidence AI synthesizes peer-reviewed medical literature reviews in response to inquiries about rare diseases. NORD has invited Kathy Kraus, MD, MSF Board Member, and Bryn Webb, MD, of our Scientific Advisory Board, to collaborate with OpenEvidence AI. The MSF’s goal is to help review, edit, and accurately share information about Moebius syndrome.
MOEBIUS SYNDROME FOUNDATION REGISTRY As part of our ongoing commitment to advancing understanding of Moebius syndrome, we would like to share updates on research surveys now available through the Moebius Syndrome Foundation Research Registry. This month, our focus is on recurrent surveys. One year after a Participant has entered information into a Registry survey, an update request will be received by the Participant. This prompts the Participant to enter information about new issues that have occurred in the past year. This will help us learn more about the natural progression of many aspects of
8 • MOEBIUS SYNDROME FOUNDATION
Moebius syndrome, which is one of the fundamental goals of this long-term research effort. The updates for the surveys are easy and can be completed quickly in most cases. Your engagement and participation in these research efforts can significantly shape future findings and lead to better support resources for the community. For detailed information, visit the Moebius Syndrome Foundation Research Registry at https://www.moebius.iamrare.org. Questions? Please contact us by email at research@moebiussyndrome.org or call (844) 663-2487 ext. 705.
CURRENT RESEARCH PROJECTS UNDERWAY WITH GRANT FUNDING FROM MOEBIUS SYNDROME FOUNDATION In 2025, the Moebius Syndrome Foundation awarded $100,000 grants to each of the following studies:
Learning from Adults and Parents of Children Living with Moebius Syndrome: A Rigorous Qualitative Study 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 Elizabeth Norton, Ph.D. (primary investigator), Judith Licht, Ph.D. candidate (co-investigator), Megan Roberts, Ph.D., CCC-SLP (coinvestigator), Northwestern University We look forward to study updates at our national conference in Pittsburgh, PA, July 22-25, 2027. Updates will also be posted to the Moebius Syndrome Foundation Research Funding page and shared in future newsletters, so our community stays informed of outcomes.
FUNDRAISERS
we love!
AGGRESSIVELY KIND CONCERT
MOVES FOR MOEBIUS
The Aggressively Kind hosted a successful charity concert on May 9 in Columbia, MD, bringing together friends, family, and members of the Moebius community to raise more than $1,500 for the Moebius Syndrome Foundation. Big thanks to Shelby Kennedy, volunteer Regional Coordinator for Maryland, Washington, DC, & Delaware for sharing her musical talent and organizing this event.
The fourth annual Moves for Moebius campaign has been taking place this September and October, and we are so “moved” by your support! People from across the country walked, rolled, and strolled to raise awareness and support for the Moebius Syndrome Foundation. Our goal is to raise $20,000 for this campaign. If you’ve not had an opportunity to donate to an individual, team, or just the general campaign, it’s not too late. We are grateful for the outpouring of support we’ve seen, and hope you’ll join us.
MULLIGANS FOR MOEBIUS MSF Board Director Michael Mendenhall organized a very successful golf tournament fundraiser to benefit the Moebius Syndrome Foundation in Las Vegas, NV on July 25. Eighty golfers participated, and the event raised over $40,000. A special thank to Michael and his family for all their hard work to make this possible!
WE’RE FUNDRAISING WITH SEE’S CANDIES! Starting November 1, help us raise $1,000+ for the Moebius Syndrome Foundation. Be on the lookout for a link to our virtual fundraiser. We’ll share it on social media and through email.
Our Colorado/Wyoming walk brought together 36 friends, family members, and supporters for an afternoon of connection, awareness, and fundraising for the Moebius Syndrome Foundation. A big thank you to volunteer Regional Coordinator Kacie Nievesmassol for organizing the event, and to everyone who came out and made it such a meaningful day for our community!
FALL 2026 NEWS • 9
with gratitude
IN MEMORY OF Nancy Child
Marian and Frank Setzman
Joan Cornell Myra Enright
Jocelyn Everly Ferrante
Therese Ferrante Ferry Matt Kuhn Sandhya Lohithakshan Venkatesh Manickavachagan Robert P. Medow Diane Morriss David Tate Jennifer Whitman Amy and Gary Willow Stephanie Winebarger
Anita Joyce Ford
Donna Hegyi-Gioia Aileen Hower Ivy Hill Cemetery Robert P. Medow
Alice Profumo Goeldner William Goeldner* Peter L. Profumo
Naseem Tarmohamed Shelly Winston Anonymous Anonymous
Amélie
Basil Nininger*
Hamilton Bachman Destiny Bachman*
Emily Baldridge David Baldridge
Ben and Henry Becker Matthew Becker
Roland Bienvenu
Dr. Anne Broussard
Lily Cicconi Anonymous
Jackson Clark
Alan and Dana Hyams*
Malakai Colyer Summer Colyer
Rhys Fancher
Jeff and Barbara Hinshaw
Celeste Jasmyn Hayden
Scotland Fernandez
Mark Mudrick
Jan Fisher
Jolene Eriksen*
Marian and Frank Setzman
Phyllis Paper Jan Fisher
Abagail Elizabeth Simmons Cheyenne and Joseph Nece Jennifer Whitman
Antonius (Tony) A. Smolders Big Blue Bubble
IN HONOR OF Natalie Abbott
Marcia & Wayne Abbott
Aggressively Kind Concert Elsa Arteaga Marcia Cooper Bob Dombrowski Brett Dombrowski Liz Goldstein Stephen Kennedy Michael Kokoski Laura Lehman Bill Lehrman Brian Martin Becki Peyton Amy Schuster
Kyla Clarke
Susan Bayer Nancy Chang Helen Cohn Jeannette Kaelin Jan Klatskin Della Levy Barbara Marcus Roni Ogin Cassandra Robbins Joyce and David Spiegler
Abigail Fulmore Stacey Fulmore
Addison Garvey
Bounce! Family Entertainment Center
Molly Goldsmith Carly Gershone Steven Gershone Ellen Kowitt Katie Wexler
Shelby Kennedy
Maureen Connors Lauren Disciullo Darlene Dyer Kim Hokanson David Miranda
10 • MOEBIUS SYNDROME FOUNDATION
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 March 16, 2026 – September 15, 2026..
Ryan Larsen
Sloan Preisler
Elizabeth Lawrence
Kari Storm
James Larsen
Amanda and Keith Davis
Dallas Lewallen
Marilyn Donofrio Andrea Enright Jesse Franklin Sandra Hanson Kimberlee Hyp Lindi Lewallen Renee Peters Ashley Roop Bea Sloan Carol Van Bramer Michael Voigt Anne Weber Colleen Weber Jerilyn Wright
Miriam Licht Ronn Medow
Magical Moebius Pumpkins Susan Scotten
Rebecca Maher
Novartis Pharmaceuticals Charity
Cheryl Manning
Give Lively Foundation
Allen Marshall Linda Marshall
Megan Menard Angela Coakley
Tina Michael
Jennifer Whitman
The Mob(ius) Squad Jan Fisher Molly Goldsmith Robert Martin Jennifer Whitman
Mulligans for Moebius Melissa Mauer Polar Shades
Khaleb Phillips
Shamika Carter Tyrell Crease Garnell Dickerson Robin Fulks Marlena Goode Keneidra Hargrove Ushelor Yvette Lowery Aisha Mason Lynette Mathis KiOwana Phillips Geletta Shavers Angelia Sutton
Samara and Seth Preisler Tim and Laurie Argall* Robert C. Argall Sr.
Lucas Miguel Torres Carlos Torres*
Kylie Vander Veer
Gary and Carleen Wargowsky
Jennifer Whitman
Anonymous Erica Klauber Robert and Chelle Medow
INDIVIDUALS Mark Christensen Patricia Ellis* Alan and Dana Hyams* Ramona Jablon Cindy Joy Erica Klauber Jonothan Latiak Dallas Lewallen Tina Michael* Stephen Miller David and Nancy Moore* Tim Smith Mona Thabit Jared Williams James and Brittany Yeager
ORGANIZATIONS Brother Chimp Brewing Company Fidelity Charitable Give Lively Foundation I.U.O.E. PayPal Giving Fund Progressive Insurance Foundation R & L Management Anonymous (2 gifts) 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.
One Tuesday + One Community =
save the date
TUESDAY, DECEMBER 1, 2026
There’s a stretch of days at the end of November that belongs to doorbusters and shopping carts. Black Friday. Small Business Saturday. Cyber Monday. Then comes the one we look forward to all year.
WHAT YOUR MATCHED GIFT DOES:
Here is what you made possible this year. When a parent called us a few days after a diagnosis, concerned and unsure of where to turn for answers, someone picked up. We talked through their questions, and thanks to research funded by the Moebius Syndrome Foundation, we were able to give some real answers and point them towards resources. That is one call. Our research and community outreach initiatives have provided hope and helpful solutions to many people this year, and none of it came from a grant or a government line item. It came from this community and the people who love it.
for 5 newly diagnosed families.
ON TUESDAY, DECEMBER 1, WE ARE ASKING YOU TO DO IT AGAIN. YOUR GIFT GOES TWICE AS FAR. Our Board of Directors will once again be offering a Giving Tuesday Match Challenge. Your $100 gift becomes $200. A $250 gift becomes $500! Double your impact on Giving Tuesday! Be sure to also check with your employer for matching opportunities and help your gift go even further. Matched gifts are limited to the challenge total, so giving early on December 1 makes sure yours is one of them. The final match amount will be announced by November 15 in the November e-newsletter and on social media. Stay tuned!
$50 becomes $100 and provides new member packets $100 becomes $200 and supports community virtual meetings and gatherings for a year.
$250 becomes $500 and makes it possible to translate and produce an educational booklet into Spanish.
$500 becomes $1,000 and allows us to support 3 to 4 regional events per year.
THREE WAYS TO SHOW UP ON DECEMBER 1: Give, and give early. Online at moebiussyndrome.org/give, or mail a check to the address below with “Giving Tuesday” in the memo line. Moebius Syndrome Foundation 1312 17th Street, #976 Denver, CO 80202 Share your story. Post a photo and say why this matters to you. Use #GivingTuesday and #MoebiusSyndrome. Awareness travels fastest when it comes from you. Mark your calendar. Circle December 1 now, before December does what December does. Let us know if you’re planning to participate! We’d love to hear from you.
Thank you for every gift you have already given, and for the ones we will never know about, the conversations you started and the people you told. 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 2026 Platinum Seal 1312 17th Street, #976 outreach toolkit Denver, CO 80202Congratulations on earning a Platinum Seal! Show off your new achievement to potential funders and supporters on social media,
Please let us knowyour if your is marketing in honor or memory of someone. website, gift and other channels. Step 1
Inspire donors on social media
Sample copy: We just earned our Platinum Seal of Transparency from @CandidDotOrg! Keep up with our accomplishments on our #NonprofitProfile [Insert your Candid profile link] Make sure to tag @CandidDotOrg, we keep a close eye on these and want to help amplify your nonprofit on social media.
Find your benefits Look for this icon on your nonprofit profile to access the benefits below and more. Shareable full profile link
FALL 2026 NEWS • 11
1312 17th Street #976 Denver, Colorado 80202 (844) 663-2487 or (844) MOEBIUS info@moebiussyndrome.org