Championing Facial Differences and Diversity: Kacie Nievesmassol Leads The Many Faces of Moebius Syndrome as Executive Director

Parker, CO (August 01, 2023) Our Board of Directors are pleased to introduce Kacie Nievesmassol as the new Executive Director of The Many Faces of Moebius Syndrome (MFOMS)! With her invaluable experience and remarkable contributions to MFOMS over the years, Ms. Nievesmassol takes the helm as our esteemed Executive Director. Beginning her journey as a dedicated board member and treasurer in 2019, she has consistently showcased exceptional leadership skills, which have played a pivotal role in the tremendous achievements and expansion in one of the organization’s key fundraisers, Riders for Moebius. Ms. Nievesmassol is the perfect candidate to lead the organization into an even brighter future.

The mission of the Many Faces of Moebius Syndrome is to improve the lives of individuals and families affected by Moebius Syndrome by increasing awareness, advocating for their medical needs, and providing resources and support. MFOMS proactively identifies individuals affected by Moebius Syndrome who are in need of medical equipment and successfully secures generous donations. Also, through education, outreach, and collaboration, we aim to raise public understanding of this rare neurological disorder and promote inclusion and acceptance of those living with it. MFOMS strives to empower and train future leaders in the Moebius Syndrome community by providing leadership development opportunities, mentorship, and networking. Our goal is to foster a community of compassion, strength, and resilience that empowers individuals with Moebius Syndrome to achieve their full potential and thrive in all aspects of life. We believe that everyone deserves the chance to live their best life, and we are committed to making that a reality for individuals and families affected by Moebius Syndrome by fostering a robust and supportive community!

“Hi! I am a mom to Kevin, who was diagnosed with Moebius Syndrome as a baby. Over the last 14 years I’ve experienced all the ups and downs of Moebius Syndrome. I’m passionate about helping and serving others in the Moebius community. Many years ago, my husband and I created Riders for Moebius which has gone a long way in creating Moebius Syndrome awareness. Riders for Moebius 2023 was a huge success, and we were able to raise a lot of money which will be put back into the Global Moebius Syndrome Community through the MFOMS. I also have a medical background working as an RN in the foothills of the Rocky Mountains in Colorado. I love being outside and spending time with my family. I’m thrilled to be the new Executive Director of the Many Faces of Moebius Syndrome and looking forward to work with all of our community members.”

Kacie, a dedicated mother to Kevin, who was diagnosed with Moebius Syndrome in infancy, has accumulated 14 years of firsthand experience with the challenges and triumphs associated with the condition. While her background is in medicine, her steadfast passion lies in assisting and supporting others within the Moebius community. Alongside her husband, she established Riders for Moebius, an initiative that has significantly increased awareness of Moebius Syndrome. The resounding success of Riders for Moebius 2023 allowed for substantial fundraising, with the funds slated to benefit the global Moebius Syndrome community through MFOMS. Living in the picturesque foothills of the Rocky Mountains in Colorado, her family cherishes outdoor activities and moments spent together as a family. “I’m thrilled to be the new Executive Director of the Many Faces of Moebius Syndrome and eagerly anticipate collaborating with the community members,” she says.

For more information about the Many Faces of Moebius Syndrome, please visit www.mfoms.org or email tim@mfoms.org.