Hello Jenny,

Included in this month's e-newsletter, you'll find:

• Rare Disease Day Re-cap

• Many Faces of Moebius Syndrome Organization Announcement

• New! IAMRARE Registry for the MSF

• Upcoming Virtual Events

• Educational Scholarships now open

• Cruise for Adults with Moebius

• Meet Katja: A Woman with Moebius Featured in Rarity Life Magazine

• Virtual Talent Show Participants Needed

Image description: A collage of individuals with Moebius syndrome and their families are placed close together. Four leaf clovers and the text lucky to have you are included. The Moebius Syndrome Foundation logo is placed in the center of the collage.

Rare Disease Day is a globally coordinated movement working towards equality in society, healthcare, and treatment for people living with rare diseases. It was started in 2008 and is observed every Feb. 28 or 29 on leap years—the rarest day of the year.

Sophia Salemi, a researcher with Dr. Bryn Webb’s lab at the University of Wisconsin, presented information about Moebius syndrome at the National Institute of Health (NIH) Rare Disease Day event! The event aimed to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.

Sophia says, “I have been in DC this past week advocating on Capitol Hill for rare diseases and am looking forward to finishing the week strong at the NIH! I have decided to present on the Moebius Syndrome Foundation and its advocacy efforts in a poster titled: ‘Moebius Matters: Empowering Voices, Advocating for Change.’ I look forward to continuing to shine a light on the amazing work being done by the Moebius Syndrome Foundation.”

Sophia Salemi previously collaborated with the Moebius Syndrome Foundation on the creation of the “Living with Moebius Syndrome: Insights from Patients and Health Care Providers” video for the Smith Genetics Conference and the “Living with Moebius Syndrome: Our Journey Together” video for the foundation website, and poster presentation for the 2023 NORD Conference.

We are grateful to Sophia and those in our scientific community who advocate for more awareness and understanding of Moebius syndrome.

The recorded Rare Disease Day video from the NIH is now available here.

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Image Description 1: Sophia Salemi, a young woman with brown hair dressed in business attire, stands with her science poster on Moebius syndrome. The title of the poster is “Moebius Matters: Empowering Voices, Advocating for Change.”

Image description 2: NORD and Rare Disease Day logos are set against a light blue background with subtle zebra stripes. Text: Rare disease is an urgent public health challenge. No person or family is immune from a rare disease.

On February 22, 2024, Many Faces of Moebius Syndrome (MFOMS) made a public post on Facebook with the following message: "It is with great sadness to announce that on Wednesday, February 14, 2024, the Board of Directors of Many Faces of Moebius Syndrome (MFOMS) majority voted to dissolve MFOMS as a 501c3 nonprofit (NP) organization. A majority vote was taken to start the process to dissolve the nonprofit status immediately.

The MFOMS board voted to dissolve the NP and to donate remaining funds to the Moebius Syndrome Foundation (MSF) to be used towards agreed upon programs. Once all accounts are closed, and outstanding invoices paid, the Foundation will receive a check for approximately $29,000 from Many Faces of Moebius Syndrome. Please note, the exact amount will not be known until the final closing of MFOMS. The funds are the collective fundraising efforts of all the Board of Directors throughout the course of our nonprofit status."

The Moebius Syndrome Foundation is thankful for the contributions Many Faces of Moebius Syndrome, their Board of Directors, volunteers, and donors have given to the community over the years." Read the full announcement here.

Jacob Licht, Moebius Syndrome Foundation President of the Board of Directors, states, "Tim Smith was among the first in the Moebius community to recognize the importance of social media and the transformation it represented for communities like ours. He and Many Faces of Moebius Syndrome have been a positive presence in the Moebius community for 16 years."

The Moebius Syndrome Foundation is grateful to be chosen as a recipient of this extremely generous donation. We will work closely with Many Faces of Moebius Syndrome leadership to ensure the financial contribution is used in a manner consistent with their vision.

For more information on our work, upcoming events, and newsletters, please join our community: Join us today.

Image description 1: Many Faces of Moebius Syndrome logo. Text: Unique Faces, United Voices.

Image description 2: A group of people with Moebius syndrome stand and sit in a large group. Their hands are extended above their heads in joy. Text: Moebius Syndrome Foundation logo. Thank you from all of us!

The Moebius Syndrome Foundation is pleased to announce that we are beginning to work on a new patient registry program for the Moebius community. We have chosen to work with NORD (National Organization for Rare Disorders) and join over 75 other rare disease communities that have already started their registry systems through the IAMRARE program. We are in the early development stages and will send out announcements to our community once enrollment is open.

Why does the Moebius Syndrome Foundation want to start a registry with the NORD IAMRARE Program?

Rare diseases present unique challenges for researchers and companies working toward treatments and cures:

• Small patient populations
• Hard to diagnose or delayed diagnosis due to lack of education and understanding among medical professionals
• Poor understanding of the natural history of the disease and its progression without intervention
• No prior pathways to follow; clinical endpoints that are often unclear
• Enrollment and retention challenges

To address the special needs of those developing treatments for rare diseases, NORD has created a natural histories patient registry platform as part of the IAMRARE Program with extensive input from FDA, NIH, patients, organizations, and experts in the field.

NORD’s IAMRARE Program is an easy-to-use system that allows patients and organizations to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease – ultimately advancing product development.

Image description: A colorful drawing featuring a large group of individuals of all different ethnicities and genders standing together. Text: Patient registries help the rare disease community.

The Moebius Syndrome Foundation is pleased to host a variety of virtual events. We aim to give people from all backgrounds and interests the opportunity to connect with others and socialize.

Coming soon, please join us!

Moebius Angels Parent Grief Support Group

These meetings are held every other Thursday, and the next will be held on March 21, 2024, at 5:00 PM PST, 8:00 PM EDT. For more information on how to attend a group meeting, please contact Sunshine Zuniga via email, or you may also contact the Moebius Syndrome Foundation.

Just for LGBTQIA+ Chat

Join us on March 24, 2024, at 6:00 PM PDT / 9:00 PM EDT for a Zoom chat open to all adults with Moebius syndrome and similar conditions who identify as LGBTQIA+. This will be a lively and safe space to interact with other like-minded people in the Moebius community. This private chat will not be recorded. Please register by Saturday, March 23, to attend. For more information and to register, please visit our website page here.

Book Club

Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma at 1:00 PM PDT / 4:00 PM EDT - Virtual Event. For more information and to register, please visit our website.

Image description 1: A purple awareness ribbon meant to represent a body that has two angel wings and a halo above it. Text: Moebius Angels Parent Grief Support Group. March 21, 2024. Moebius Syndrome Foundation logo.

Image description 2: A vertical rainbow representing the LGBTQIA+ flag is set against a white background. Text: LGBTQIA+ Chat, Sunday, March 24 at 6 PM PDT, 9 PM EDT. Moebius Syndrome Foundation logo.

Image description 3: A book cover shows an African woman's profile. She has long, dark hair swept over one shoulder and is wearing an elegant blue dress. Text: Haben. The Deafblind woman who conquered Harvard Law. Haben Girma.

The Moebius Syndrome Foundation is pleased to announce our annual Educational Scholarship opportunity! Applications are NOW OPEN and close on April 30, 2024. We would like to encourage applicants to apply early.

The Moebius Syndrome Foundation will award several educational scholarships of up to $3,000 each to individuals with Moebius syndrome who plan to attend an undergraduate college, university, technical, or post-secondary vocational school this coming summer or fall in 2024. Applicants must live in the United States to be eligible.

In 2023, we were thrilled to be able to award eight deserving students with scholarships in the amount of $3,000 each. This would not be possible without the generosity of our donors.

Image description: Two young women with Moebius syndrome stand close together, looking into a camera. One has their arm draped across the other's shoulders. Text: Educational Scholarship Application Now Open. Eligibility: Moebius syndrome, College, technical or trade school, live in the United States. Apply on our website: moebiussyndrome.org. Moebius Syndrome Foundation logo.

You asked, and we listened! There have been many requests for more social opportunities specifically for adults with Moebius syndrome, and the Moebius Syndrome Foundation is pleased to announce that we are planning a cruise just for Adults with Moebius.

On August 13-18, 2024, attendees, ages 21+, will have the opportunity to sail away on a five-day cruise to the Mexican Riviera. This will be a fun time to meet new friends while enjoying all the fun activities and relaxation that a cruise offers and the opportunity to explore Cabo San Lucas and Ensenada, Mexico, in daytime excursions. Adults with Moebius are welcome to bring a partner to share a room with, or we will do our best to help pair anyone traveling alone with another adult to share a room.

Don't miss the deadline of April 12th to pay a deposit and get the Moebius syndrome group rate!

 Find out all of the details on our website.

So, save the date, and get ready to say "Bon voyage" as we make memories together that will last a lifetime!

Image description: Mexican Riviera destination photos showing magnificent rock structures set against a backdrop of the ocean, blue skies, and sunshine. In one of the photos, a woman stands on top of a rock she has scaled. Her arms are stretched out over her head as a sign of victory. Text: Cruise excursions. Moebius Syndrome Foundation logo.

You are invited to view the latest edition of Rarity Life Magazine, featuring Katja Taits, a vibrant woman living with Moebius syndrome.

This is the 9th edition of Rarity Life, and they are proud to once again create a magazine packed with images, stories, and experiences by people who live with or know about rare diseases, disabilities, and cancer. But more than this, Rarity Life is for anyone with an interest in our communities.

You can subscribe to Rarity Life and view this most recent publication here or by clicking the button below.

Image description: A young woman with Moebius syndrome sits casually on a chair next to a vase of yellow flowers. She is wearing a blue blazer with a white shirt and jeans. Text: Finding people who accept you can be hard, but it is possible. Seriously Spring, featuring Katja Taits with photographs by Ceridwen Highes. Rarity Life. Subscribe now.

We're ready to celebrate you!

Members of the Moebius community are invited to join our Virtual Talent Show & Celbration on July 25, 2024! This family-friendly event is open to anyone with Moebius syndrome or a similar condition worldwide. All ages and forms of talent are invited! Participants are welcome to invite their family or friends to join in their talent performance.

This event will be broadcast live from the official Moebius Syndrome Foundation Facebook page. It will also be pre-recorded and available on Vimeo and our website afterward.

To sign up, please complete this short form and upload your video. Alternatively, you can send your video after you complete the sign-up form. All videos must be received by June 1, 2024.

Please contact us with any questions. We look forward to seeing you shine!

Image description: A young man holding a small guitar takes a bow with his dad applauding in the background. A young girl with a limb difference does a gymnastics, and a man wearing a black and white checked shirt holds a microphone and sings. Images of guitars and musical notes in neon are shown. Text: Talent Showcase. Virtual talent show and celebration. Thursday, July 25, 2024. 5:00 PM PDT and 8:00 PM EDT. Moebius Syndrome Foundation logo.