Countdown to Moebius Syndrome Awareness Day 2019
"The MFOMS website is a great place to get started, not only in learning about Moebius, but also in learning more about the people who have it and actively becoming part of the community. As a person with Moebius Syndrome, I found it rewarding to be able to pull up pictures of other individuals around the globe who have the same disability as I have, because it instantly made me feel not so alone in my daily struggles. I also believe that the site is very professional in that it allows all viewers to provide active feedback, create new resources and continue to spread awareness for this rare illness."
- Jon Fisher, Aurora Col, Adult with Moebius Syndrome
"I like how the Many Faces Of Moebius Syndrome community and website unites all of us with Moebius Syndrome and gives us a goal to achieve. That is global awareness. And the more awareness that we raise, the easier the next people to be born with it will have it."
- Roger Krell, Red Deer Alberta Canada, Adult with Moebius Syndrome
"One thing that has always stuck with me when I first became introduced and got involved with the MFOMS group was the over all sense of family whether we were rejoicing in someone's little victory, or mourning someone's loss. These days lots of actual families aren't close anymore; but there's never been a moment when I didn't feel like I couldn't shoot someone in the group a message. It's that "bond" that makes the MFOMS much more than just a group and I'm so glad to be a part of that."
- Donnie Downs, Delight North Carolina
It is very important to me to be an MFOMS Ambassador because it links my heart with my soul and brain to work for Moebius awareness day. I want to collect the data of the people with Moebius in Venezuela and South América. Let´s do a wonderful job. We can do it. Go Go Go.
- Susana Romero De Parrella, Caracas, Venezuela, Adult with Moebius Syndrome
"I have met some amazing individuals and families these past years with Moebius Syndrome. Even tho Hannah is not with us physically today. She still remains a big memory to many people." "When I was asked years ago to be apart of the MFOMS. I had no idea the impact it would have on my life and bring so much awareness to those who have suffered from lack of acknowledgement." 'Today we are here to all stand together, with the MFOMS. United we will be forever.' It is a pleasure to call you all my family.'
- Katie Pennycate, Richmond Virginia
Hi it's a real privilege to be part of the mfms ambassador group, the privilege of wearing these uniforms is fantastic they are eye catching and unique (can't wait to wear it!!) we are all proud and excited to fly the flag for this great cause....
- Bob Emery United Kingdom, Adult with Moebius Syndrome
Ever since I learned that there was a website dedicated too educateing the public about Moebius Syndrome I have followed that site. I have learned so much on a syndrome that my grandson, Christopher has to live with. Thank you for having a place to learn and share Moebius stories.
- Virginia Ann Villarreal, Houston Texas
When I first did a scavenger hunt on the web for Moebius syndrome 15 years ago there was nothing to be found. I love the many faces of moebius syndrome website as it helps us raise awareness about a rare condition- it also lets families and persons with moebius know that they are not alone. The many success stories, the many trumphs and tribulations I believe this site is truly making a difference!
- Rak Mehta, Chicago Illinois, Adult with Moebius Syndrome
My family discovered the website for MFOMS when my niece, Dakotah, was diagnosed at birth with Moebius Syndrome. It helped us to understand what to expect for Dakotah from birth until now through shared experiences of others. My sister and brother-in-law found a support system through the many members that proved invaluable. What I admire most about the MFOMS community is the acceptance, support and love that everyone shows one another. It is more than just a place for resources, it is also an extended family to many.
- Andrea Sweetwood Smith, Denver Colorado
When, at the age of twelve or thirteen, I first started researching Moebius Syndrome, there was almost nothing to be found. We are so fortunate now to be able to have more information and support, and MFOMS has definitely contributed to that. It means so much not only to be able to share my story with others affected by Moebius, but also to be able to learn from them, share experiences, and come together as a family. MFOMS truly makes that happen.
- Sophie Boffa, Sydney Australia
I would like to say, that, I as a mother of a child with Moebius, am so greatly appreciative of what we have learned from the MFOMS community. We all share our ups and downs as we face them every day. It is so nice to not get judged for asking questions, sharing our struggles and just wondering of the what ifs. Some of us are far away but feel so close at the same time. I love that we can lean on each other when times are needed. We can share anything. We are all one big family!
- Danielle Barron, Oshkosh Winconsin
Hello! My name is Sarah Tassi I live in Des Moines, IA. I was blessed to have a little boy (Preston) come into my life in May of 2012. We didn't know anything was medically different with Preston until he was born. We noticed his right hand soon after he was born (he was born with just a thumb on his right hand). And shortly after that his breathing was not normal. After our nursing team got him breathing better, they consulted with the doctor of their findings. Preston had a high palate, an under developed side of his tongue, and also his eyes were wide opened when crying. By the grace of God, I had chosen a doctor by seeing her picture and thinking "she looks kind". Well, this kind doctor turned out to be an angel. She had worked with a couple other children with Moebius. So Preston's diagnosis was made at two days old. Like many, I'd never heard of Moebius. So I was diligent in learning all that I could about it. I decided not to be sad about this diagnosis - that I could've let get me down... But I took it in the way - that God picked me and my husband for a reason to be this little boy's parents. And therefore, I was going to do everything in my power, to fight for him in every way. I'm so very grateful for finding amazing groups like MFOMS and Moebius Moms on FB. I have gotten so much help and encouragement with questions and feelings of worry. And it's given me an outlet to also, return that help to new moms of Moebius kiddos. For me, I know someone bigger than me, placed Preston in my life for a reason and vice versa. He is now a very lively, sassy, and adorable 3.5 year old. My life changed for the better the day I had Preston and I will always fight for him, because that is my job as his mother. It's a job I gladly accept!
-Sarah Tassi, Des Moines IA