MOEBIUS SYNDROME FOUNDATION NEWS May 2017
Celebrating our Moebius Moms What Bullying Has Taught Me Austin Halls Releases Album Educational Scholarships Awarded
Photo courtesy: Rick Guidotti, Positive Exposure
Moebius Syndrome Foundation PO Box 147 Pilot Grove MO 65276 Phone: 844-MOEBIUS firstname.lastname@example.org www.moebiussyndrome.org
A Letter from the President
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. Executive Director Kim Cunningham email@example.com Moebius Syndrome Foundation Board of Directors Vicki McCarrell President Matthew Joffe Vice President Marcia Abbott Secretary Jacob Licht Treasurer Natalie Abbott Roland Bienvenu Kathleen Bogart Kevin Smant Monica Woodall Emeritus Lori Thomas Moebius Syndrome Foundation Scientific Advisory Board Elizabeth Engle, MD Boston Children’s Hospital Harvard Medical School Boston, MA Ethylin Wang Jabs, MD Icahn School of Medicine at Mount Sinai New York, NY Marilyn Miller, MD University of Illinois Chicago, IL Richard J. Redett, MD Johns Hopkins Hospital Baltimore, MD Rhonda Robert, PhD University of Texas MD Anderson Cancer Center Houston, TX Wendy Roberts, MD Integrated Services for Autism & Neurodevelopmental Disorders Toronto, Ontario Sara Rosenfeld-Johnson, MS, CCC-SLP Innovative Therapists International Charleston, SC Ronald M. Zuker, MD The Hospital for Sick Children Toronto, Ontario Moebius Syndrome News Kim Cunningham, Editor Graphic Design Natalie Abbott firstname.lastname@example.org The Moebius Syndrome News is published two times a year. Articles, photographs, questions and comments 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 © Copyright 2017. The Moebius Syndrome Foundation. All rights reserved.
Greetings Friends, Spring is here and I love seeing photos of young people with Moebius syndrome on social media who are graduating from high school and colleges/ universities to move on to the next important stage of their lives. Congratulations to all grads – and to their families who have supported them throughout the years. Time is your friend with Moebius syndrome. Our babies, who are challenged at birth by feeding diﬃculties, low muscle tone, club feet and other issues, go on to become successful in life. For those of you who are new to the world of Moebius syndrome, hang in there – your children will amaze you! Research is progressing in the quest to determine the cause of Moebius syndrome. The Moebius Syndrome Foundation is providing $50,000 each year for 2016 and 2017 to Alan Tenney, PhD, a Senior Postdoctoral Fellow in Dr. Elizabeth Engle’s lab at Boston Children’s Hospital. Dr. Tenney’s work focuses on his knowledge of facial motor development and together with Dr. Engle’s lab’s expertise in the human genetics of cranial nerve development, they are working toward a mechanistic understanding of Moebius syndrome. The Foundation is also providing a $75,000 grant for 2016 and 2017 to the National Human Genome Research Institute (NHGRI) at the National Institutes of Health. The funding is being used to support research conducted by Irini Manoli, MD, PhD, and her colleagues at the Medical Genomics and Metabolic Genetics Branch of the NHGRI. The title of this work is ‘Multidisciplinary phenotyping of Moebius syndrome and other congenital facial weakness disorders.’ This grant provides funding for 80% of the salary for Flavia Facio, Genetic Counselor, to work with Dr. Manoli to compile the massive amount of data that has been collected and to work with families who travel to the NIH for the Moebius syndrome study. I want to reach out to my wonderful forever friend and Moebius Syndrome Foundation Co-Founder Lori Thomas (Chelsey’s mom) who recently resigned from the Board of Directors. Lori’s dedication and passion for people with Moebius syndrome and their families knows no bounds and she will continue her outreach, compassion and support to families. We love you Lori and you will be dearly missed on the Board. Lori will continue to attend the research symposiums held prior to the conferences every two years. It is because of her advocacy in getting Chelsey ‘smile surgery’ in 1996, that the Moebius Syndrome Foundation grew exponentially into what it is today.
Vicki McCarrell President
A Letter from our Executive Director Dear Friends, As summer approaches, I am already sad that it is not a conference year. Our event in Long Beach last summer was amazing and I wish that it was time for us to meet again in Florida. And I think that many of you are feeling the same way. However, that is exactly the reason the Moebius Syndrome Foundation has launched regions across the United States. I would like to publicly thank Roland Bienvenu for all of his hard work this past year; he has been instrumental in the launch of this new structure and it is because of his tremendous dedication that it has been as successful as it has been. Our amazing Regional Coordinators - who you will read about more in this issue - have been working with Roland and myself, planning events across the country, so that families and individuals can meet up more frequently than the conference. We wanted to continue the momentum and energy from the conference in the "oﬀ " years, while also making it more convenient and aﬀordable for people to get together. It is our hope that you have had the chance to attend a Moebius Gathering. If not, don't worry, there is a lot more planned! Read more on page 5. Conference planning is also underway and I would also like to thank our planning committee members for their time and creativity. There are some great ideas circulating. We are going to have new topics never discussed before, more social events than ever before, and a diﬀerent structure for the event, all of which we are excited to announce. If anyone has thoughts or ideas for the conference, please email me (email@example.com). We want to make this the best conference yet, so please let us know what you want to see at the event. As you will read in this issue, Lori Thomas has stepped down from the Board of Directors. She served the Moebius Syndrome Foundation for many years and will be missed greatly. Lori, thank you for your dedication to the organization! Many of you might be wondering if we will be filling her position on the board. The Board of Directors will be meeting this summer and going through a thorough Strategic Planning Session. Within this process, we will be looking at the board structure and figuring out the best next steps. But look out for an announcement on this shortly. There is a lot happening right now and we are making great strides forward. We continue to focus on research, we have awarded educational scholarships for the second year in a row (congratulations to all!), we are holding regional events across the United States and we have launched Talkin' Moebius, a Webinar series featuring diﬀerent topics of interest to those with newborns to adults within the Moebius community. Everything we are working on is to sustain The Home for the Moebius CommunityTM. As always, please reach out to me with any ideas or feedback. Sincerely,
2017 Moebius Syndrome Foundation Educational Scholarships Awarded The Moebius Syndrome Foundation received ten applications from highly qualified young people this year for the PostSecondary Educational Scholarships. We are pleased to announce that those awarded with $2,000 scholarships toward their college tuition are Brianna Kelley, Mike Gonzalez and Dominque Piotrowski. Brianna Kelley of Lawrenceville, GA, will attend the University of Iowa where she will study Communication Sciences and Disorders. Brianna is a member of Phi Kappa Phi, Golden Key International Honor Society, Sigma Alpha Lambda, and Phi Theta Kappa. She tutors at risk students in math and science, speaks to students about having a disability, and is a member of the Student Technology Fee Advisory Committee. In her essay, Brianna says, ‘I have never let Moebius syndrome or doctors define who I am and what I can accomplish. I had cochlear implant surgery and my goal is to improve speech production and quality of life for all individuals living with hearing impairment.’ Mike Gonzalez of Bridgeview, IL, will attend Northern Illinois University majoring in Rehabilitation Services. Mike worked hard to attain the rank of Eagle Scout and is an Argo Ambassador helping students with special needs in his high school. He is in the marching and jazz bands, on the varsity bowling and tennis teams, and is a member of National Honor Society. Mike states in his essay, ‘Growing up, I had to have many surgeries on my feet to be able to walk. . . to fix my clubbed feet. I never let my ‘disability’ take the best of me and always fought through to earn what I deserved. I want to be able to help people get through their obstacles in life just like those doctors and nurses did for me. I want to be there for other people.’ Dominque Piotrowski of Fairport Harbor, OH, will attend Lake Erie College where she will major in Equine Therapy. She is on her high school honor roll, merit roll, was named Student of the Year, and mentors children with disabilities at her church’s Camp Koinonia in the horse riding program. She has gone through 10 procedures to improve her quality of life and is an advocate for the Many Faces of Moebius. Dominque volunteers for the Cancer Relay for Life in honor of family members. In her essay Dominque states, ‘Constant bullying at school and teachers telling me I could not accomplish the goals I set, kids teasing me and defending others with disabilities made me stronger. After getting my Bachelor’s in Equine I will continue my education in youth ministry and will own and operate a horse ranch/camp using riding skill sets to improve people from all walks of life.’ Congratulations to these incredibly talented, intelligent young people. Moebius Syndrome Foundation News May 2017
Introducing the Regional Coordinators for the Moebius Syndrome Foundation
Becky Becker Kiowana Philips Jennifer Garvey Lisa Smant Tony Wilson Midwest Region Southeast Region Northeast Region Southwest Region West Region Becky@moebiussyndrome.org Kiowana@moebiussyndrome.org Jennifer@moebiussyndrome.org Lisa@moebiussyndrome.org Tony@moebiussyndrome.org
Upcoming Moebius Syndrome Foundation Regional Events Saturday, May 27, 2017 Fort Gordon, Georgia 2 PM - 5 PM Come out to meet other families, share information, fellowship and have fun!
Photos from the Southeast Region Mighty Moebius 5K/Walk January, 2017
Sunday, June 11, 2017 Northeast Regional Mighty Moebius 5k Walk East Meadow, New York 10 AM - 1 PM The purpose of this walk is to promote awareness and acceptance. All funds raised from this event will go directly to the Moebius Syndrome Foundation. Here is the link to register: https://www.raceentry.com/race-reviews/northeastregional-mighty-moebius-5k-walk For more information contact Jennifer Garvey at firstname.lastname@example.org. Saturday, July 29, 2017 Palmdale, California For more information, contact Tony@moebiussyndrome.org Saturday, August 19, 2017 Grand Haven, Michigan The event is co-sponsored by Many Faces of Moebius Syndrome. Interested in attending? Visit MSF Facebook page or contact Becky Becker at email@example.com.
Austin Halls Releases Album - Available Now! Austin Halls, 18, has recorded an album, Me Myself and Time, which is now available on iTunes, Spotify, and all other music platforms. Thanks to his generosity, all of the proceeds go directly to the Moebius Syndrome Foundation. Halls used the website Band Kind, a crowd sourcing website similar to Go Fund Me or Kickstarter, but for musicians. "I want to thank everyone from the bottom of my heart who has helped me to achieve my goal," says Halls. "I went into the studio with the dream of releasing one song, but with the help of Band Kind and everyone's generosity I had the opportunity to record four of my original songs that mean so much to me.” As he recorded in the studio, Halls had the privilege of meeting Diana Ross' daughter, Rhonda. She was also recording her album and Halls got to watch! His local newspaper, The New Jersey Herald, also featured his journey. Read more here: http://www.njherald.com/20170214/ sandyston-teen-drums-up-support-for-moebius-syndrome Thank you for sharing the proceeds with the Moebius Syndrome Foundation, Austin. You are not only talented, but also a generous human being! 4
What Bullying Has Taught Me By Kari Storm I, like many other kids, was bullied growing up, and I would like to take this opportunity to share my experience about how bullying impacted my life. I remember being a loud, outgoing, confident young child at the age of three. I often approached complete strangers and struck up conversation. I thought I was pretty awesome. Oh, to be three again! From kindergarten on, a change began to happen. That’s kind of when kids start noticing diﬀerences in each other. Being born with Moebius syndrome, I stood out as having a diﬀerence. Bullying started, and didn’t completely stop until I was in high school. So, from about age five to 15 I was bullied. I went from being loud to quiet, outgoing to shy, self-confident to insecure. I developed high anxiety and low self-esteem. I hated being diﬀerent and believed my diﬀerences were ugly. I have a lot of inner scars and pain from being bullied, but I wouldn’t change it. It’s shaped the person I’ve become and has given me my life purpose. I am so much stronger for it and possess an understanding I would have never known had I not been bullied. I have such overwhelming love, compassion, and empathy for all beings. I treat everyone I encounter with kindness. I try my best to seek understanding and forgive those who are cruel to me because I don’t know what they are going through. There’s a saying that “only hurt people hurt people”, and I’ve found that to be true; even for myself. My bullies were hurting because they, too, were being bullied in some way. So they needed an outlet for that pain and to feel powerful. I was being bullied, so, I, too, bullied at times. I was a terrible bully, though. I remember on my bus there was a mentally disabled girl, and the other kids would take her hat oﬀ her head and throw it around the bus. I was often bullied on the bus, so the fact they were picking on her took the heat oﬀ me. So, I joined in and threw her hat around. Only to go and pick it up, give it back to her, and befriend her. In 3rd grade the kids would bully this boy for being fat. I would join in from time to time. The teacher would yell at him almost every day for not having red pens. I knew his family was poor, so I asked my mom if we could buy him some red pens. I anonymously put them on his desk before class one day. Another time in 4th grade, we learned in class about May Day and how people would leave May Day baskets on people’s doorsteps, ring the doorbell, and run away so they wouldn’t know who left it. So I asked my mom to help me make a May Day basket, and I left one on the doorstep of that same boy. Thinking back on it, it almost brings tears to my eyes how freaking proud I am of that sweet, kind-hearted little girl. With all the crap she was going through, she still had such compassion and empathy. Sometimes I am still so hard on myself, but thinking back on everything I’ve been through, I know I’ve come so far and have grown so much as a person. Undoing 20+ years of low self-esteem and negative self-talk takes time and patience. More and more I see glimpses of that three-year-old me. For so long my anxiety has made me want to run and hide from people because I didn’t trust them to *see* me. But, I’m ready to be seen. For so long I silenced my voice due to insecurity. But, I’m ready to be heard. I may not speak with total confidence, but at least I’m having the courage to speak. I want my story to make an impact. I want to encourage and inspire others to love themselves; to recognize the beauty and uniqueness in themselves and in others; and to treat one another with loving-kindness, compassion, and empathy. Think of what a beautiful world that would be. This is my life purpose. I never thought I would think of being bullied as a gift, but it truly was. I am grateful for the experiences I’ve had because they have taught me priceless lessons. I am better because of it. I’m in the process of loving myself and my diﬀerences because I am worth it. And so are you. And so is everyone. We are all beautiful; worthy of being seen, of being heard, and of being loved.
Living with Facial Weakness: Tell The NIH Your Views! Barbara Biesecker, PhD, MS National Human Genome Research Institute, National Institutes of Health We want to hear directly from people living with facial weakness and learn about how it has or has not aﬀected your daily life. Please tell us your views in an anonymous survey – http://j.mp/29CifaN Our purpose is to better understand the quality of life for those with facial weakness, identifying areas where it may be improved in the future. Thank you very much for contributing! Moebius Syndrome Foundation News May 2017
In honor of Mother's Day, we would like to say thank you to all of the wonderful Moms in our community. Thank you for all that you do! The Moebius Moms Facebook Group is a private space for mothers to ask questions, share stories and connect with others. We asked a few of our moms some questions:
Beth Battina What’s your your favorite thing about being a mom? Definitely watching how their personalties change over the years. How they develop, change and grow year every year. Now that they are in their teens, it is fun watching them mature into young adults. What’s the most challenging about being a mom? Not knowing if you’re doing it right. What are your interests/hobbies outside of motherhood? I love anything crazy, but I don’t need much me for it anymore. While spending me with friends is always something I like to do, I also cherish my alone me. I love reading – actually audio books are now my favorite. I can get other things done while I’m “reading!” What are you passionate about? Information. I am constantly seeking more information. I love reading and watching documentaries or learning a new skill. Tell me something unique about yourself. My twins were almost triplets! (One miscarried very early on.) What is the name of your Moebius child, and how old is he/she? Charlie is my sweet Moebius child. He’s 14 years old and hands-down the most interesting person I’ve ever met. Do you have other children? If so, names/ages? Yes, Charlie has a twin brother, named Mac. Two fourteen year old boys are plenty of work for me! What is your profession? I work in Human Resources and I love it! What advice would you give to other moms? Trust your instinct. I think mothers have a great instinct and intuition. They know their children the best.
What’s your favorite thing about being a mom? The love between me and my kids. Sharing life together. When our hearts meet in joy. What’s most challenging about being a mom? Having other people that depend on you for everything! What are your interests/hobbies outside of motherhood? Reading, hiking, nature, digital scrapbooking, quilting, playing board games, biathalon (watch it at the winter games 2018 or on YouTube now, awesome sport), dance, marimbas, kayaking. What are you passionate about? God, treating my body (and my family's bodies) and our environment well but living to protect both and preserve our environment in a good state for generations to come, living a (man made) chemical free lifestyle as much as possible. Tell me something unique about yourself. In college I played for the women's club ice hockey team, was in the dance company, and played in a marimba band. I still like doing them all but with busy life as a mom I don't get to any of them very often. What is the name of your Moebius child, and how old is he/she? Luke is 8. Do you have other children? If so, names/ages? Hannah is 5 and River is 1. What is your profession? I am a wetland ecologist turn stay at home mom/nurse/teacher. What advice would you give to other moms? Advocate for your child, trust your mom gut, know what is going with all parts of your child's therapy and care. Know how to care for your child medically yourself even if you have nurses and others to help. Sometimes it has helped for me to stop and think about 5 or 10 years down the road when things seem very intense at the moment. Slow down a bit, let the stress go down a few notches, and spend time being okay with where you are right now and enjoy moments with your child. This is hard for me too. Work to let your kids be average kids as much as possible. Is there anything else you’d like to add? My relationship with God is a large part of how I live my life and handle care with Luke. Jesus is my rock. Things don't always go well and I don't always act like I should, but having a relationship with God has helped me work through my grief, hard times, and to enjoy my family as they are.
To Join Moebius Moms:
& request to join! Then send a message to the moderator about your child with Moebius syndrome.
Our Moebius Moms! Amanda Carcione
What’s your favorite thing about being a mom? I love that I am shaping this little human being. That the things I instill within him now are the things he will take into this world. That the things I teach him are the things that will help him become his own incredible person. What’s most challenging about being a mom? For me, the most diﬃcult thing about being a mom is balance. Finding that perfect balance between mother, wife, daughter, friend, employee, woman and self. There are so many things that I find need to be done and never enough time. What are your interests/hobbies outside of motherhood? I adore photography, reading, and working out. What are you passionate about? Honestly, I am passionate about my son. It's totally cliche, I know, but I am. He's my all. I want him to be the best him he can be. Tell me something unique about yourself. When I was a little girl, I wanted to be an astronaut. To this day, when I go outside on a clear night, I always look up and wonder what it's like "up there.” What is the name of your Moebius child, and how old is he/she? Wyatt Paul is six. Do you have other children? No other children. Unless you count our dog, Jethro. What is your profession? I am a Legal Assistance/ Practice Assistant. What advice would you give to other moms? Enjoy each day. Even the tantrums. While they are sometimes diﬃcult, one day you will look back on them and smile. They aren't little long and these are the memories you'll want to hold tightest. Is there anything else you’d like to add? Some days will be hard. Really hard. You will see other children the same age as yours and compare every single thing. But, you've been given a gift. One that, no matter how many times you question or compare, calls you mommy. And when he/ she looks at you and says or signs "I Love You" and you feel as though your heart is gonna burst from love and pride, you will forget everything else. Because in the end, that's all that matters.
What’s your favorite thing about being a mom? My favorite thing is watching them learn new things and explore the world. What’s most challenging about being a mom? Trying to meet everyone's needs. What are your interests/hobbies outside of motherhood? Ha ha! I've been a mom for 14 years. It's hard to maintain hobbies. But I do enjoy sewing. What are you passionate about? Healthy eating and clean living, i.e., no chemicals and the use of few medications in our lives. Food is our medicine. Tell me something unique about yourself. I’m an Army wife and we've lived in 9 states in the 11 years since my husband joined. What is the name of your Moebius child, and how old is he/ she? Cora, she is 18 months. Do you have other children? If so, names/ages? Yes. Scheeli, age 13, almost 14; Bronwynn, age 12; Piper, age 9; Wesley, age 7; Levi, age 5; Aria, age 4 What is your profession? Homemaker, homeschooling mom. What advice would you give to other moms? Don't compare your children. They are unique and special just the way they are!
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Moebius Syndrome Foundation News May 2017
Lori Thomas – Pioneer Woman By Vicki McCarrell I met Lori Thomas in August of 1991, after the two of us began a quest to find one other person in the world who had Moebius syndrome like our kids - my Sean was 1 year old and her Chelsey was 3. We had both written to NORD, then Forward Face and other craniofacial support groups to search for others who shared our children’s frozen faces. I still have the letter from Forward Face in New York, which said they had received an inquiry from a lady named Lori Thomas, who lived in Reseda, CA. I lived in Van Nuys – 4 miles from Lori. I called her immediately and she invited me to her home that weekend where we met and thus began a lifelong friendship. Lori had also invited Liz and Ted Simpson from Orange County, Patrice and Jensen Jennings and Sandy Goodwick from the San Fernando Valley. It was wonderful to see Chelsey, Ted and Preston running around, eating potato chips, laughing and being normal kids. I knew then that my Sean would be fine. Sandy was a teacher, and gave me the hope that our kids could become anything they wanted. All of us had been told we’d never meet anyone else with Moebius syndrome. We knew that wasn’t true. This condition had a name, we had a group of 5 with Moebius syndrome, and we began to meet regularly in my living room while the kids played outside. Gradually, after writing to numerous magazines and newspapers to let people know we had a support group, our little group began to grow. As people called us, we went to visit them. Lori and I met moms at LAX on layovers, went to hospitals to advocate for kids that doctors didn’t know how to treat, spoke to physician groups at Los Angeles hospitals, and when I won $10,000 from Maybelline in 1994 for an article I’d written for ‘Ladies’ Home Journal’ about the first Moebius Syndrome Conference, I put the money in an account for a future Moebius Syndrome Foundation. Lori came with me to New York to accept the money and we met a family in Brooklyn whose daughter had been one of the first children to have the ‘smile’ surgery with Dr. Ronald Zuker. Lori went home and told Chelsey about the little girl and Chelsey said she also wanted that surgery. One day in 1995, a public relations man called me to see if there were any developments in our little Moebius Syndrome Group, so I told him about Chelsey’s wish to have smile surgery, but her insurance company wouldn’t pay to have Dr. Zuker do the surgery. He met Lori and Chelsey and managed to get a story in the ‘Daily News’ and the ‘LA Times’ about the little girl who wanted a smile. Kaiser Permanente then ‘miraculously’ decided to pay for Dr. Zuker to come to Los Angeles to do the surgery. Thanks to Lori and Chelsey, the story of the little girl with no smile was splashed across the world on all of the major news networks, magazines and newspapers, and people who also had Moebius syndrome began to call and write. There was no internet in 1996 when Chelsey had her surgery, so phones and letters were our mode of communication. We started a newsletter – the first one went out to 35 people – an amazing number to the physicians we talked to, and hosted a conference in Los Angeles in July of 1994 where for the first time, 26 people with Moebius syndrome of all ages came together from across the US and Canada. Lori and I continued to welcome people. We folded newsletters by hand, attached the ever growing number of labels, and knew we were on to something big. As the years have gone by, and we’ve grown into a foundation with over 2300 on the mailing list, a Board of Directors and Scientific/Medical Advisory Board, worldwide research and support groups around the world, Lori’s passion for helping families aﬀected by Moebius syndrome has never ceased. She and I still get excited when we see those beautiful little babies with the dark eyes, triangle mouth and a look of determination that knows no bounds. We call or text each other to say ‘did you see that little one?’ We know the excitement of parents seeing their babies hold up their heads for the first time, doing the army crawl, learning how to eat, taking that first step long after other kids their ages. Chelsey is now 28 and happily married. Sean is 26 and a comedy writer. Lori’s drive and common sense approach to life’s obstacles helped make the Moebius Syndrome Foundation what it is today. The Moebius Syndrome Foundation Board of Directors recently voted Lori as a Board Member Emeritus. Photos courtesy Vicki McCarrell; Rick Guidotti, Positive Exposure
Moebius Syndrome Foundation Financial Summary 2016 Income Donations/Conference Ads Conference Income
Interest Other Income
Thank you to all of our donors!
Your generous support is greatly appreciated!
$3,099.00 #4 $970.00 #5 $784,993.00
Expenses 2016 Conference
Foundation Staﬀ 2018 Conference Hotel
$35,934.00 #3 $12,000.00 #4
College Scholarships Awarded
Board Travel & Other Expenses
$274.00 #16 $479,250.00
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In Honor Of
In Memory Of
Natalie Abbott Marcia Abbott Kimberly Banning Cheryl & David Banning Ava Buck Margo & Charles Ramsey Addison Garvey James Garvey Jordan Hegel Steve & Van Hegel Ione Idell David Idell Addison James John Goshorn Matthew Joffe Laura/Arkady Greenwalk/Teila Kelsey Kieger Adam Tank Becky & Jessica Maher Norvartis Pharmaceuticals Corp Dominic Nelson Gina Alvino Kacie & Kevin Nievesmassol MGA Home Healthcare Colorado Deacon Ken Ramsey Batavia Brotherhood Banquet Committee Mathias Santana Pablo Menendez Elena Trecanao Mary Olsen Yvette Yeager Cecelia Oh Kylie Vander Veer Gary & Carleen Wargowsky Kendall Washer Mitch Washer Harry Sally Conway
Jason Michael Tassi Mark Stanley Darcy Vik Samir Mehta Scott Eidson Chris Heck John Karmen White Sharon Doolittle Linda Gann Daniel & Sandra Buss Thomas & Barbara Parliman Adrian & Janine Mohr John & Cimdy Schildbert Donald & Dana Medsker Michael & Liesl Lucas Ken Wohlgemuth Dr. Allen & Andi Blume David & Patricia Meyer Jeanne & Paul Dwyer Thomas & Colleen Sanft RE & Jackie Eppert Jim & Kathy Booher Scott & Diane Atchison Dr. Gary & Pam Luna Kathleen Kelly Steven & Lisa Jervik Catherine Dunning Robert & Cynthia Cramer
In Memory Of Bill Carney Lynn Rigioni Terrance Garbuzinski Linda McDaid Teddy Giegerich Mirian & Frank Setzman Charles Griffith Marvin Purcell Bill & Helen Hoover Linda Boling Helen Schwartz Gwen & Sue Williams June Smith Janice Moudy Allison Wolf Jerry Patricio Gabriel Shall Nancy Lueckhoﬀ
Robert Tate Kathy MacDonald Wendell Sgendorf Pauline Hawkes John Karner Valerie Molney Linda Arroyo Ann Rumpf Marie Weiss Jeﬀ Wegner Emily Deakins Friends and Family of the Tates Dorothy Tate Jeﬀrey & Lynn Mair Barbara Donohue Mary Navin John & Darlene Kadlac Leo & Beverly Malkasian Sharon Anich Arthur & Joyce Rumpf Patricia Scott Carol Fibich Mary Jo Nevermann Marilyn Schultz Jean Ecos Donations Anonymous Benevity Community Impact Fund Booster Campaign Noah French Gina Gee Joseph Haschka Jennifer Kaczor Eric Polk Precision Castparts Corp Mark J. Sullivan
Moebius Syndrome Foundation News May 2017
Pack Your Bags for Sunny Florida! The 13th Moebius Syndrome Foundation Conference is being held in St. Petersburg, Florida. The oﬃcial conference hotel will be The Vinoy® Renaissance St. Petersburg Resort & Golf Club. Join us Friday, July 20 - Sunday, July 22, 2018. The planning is already underway and we are adding in new topics, additional sessions, and more social events than ever before.
Friday, July 20 - Sunday, July 22, 2018 The Vinoy® Renaissance St. Petersburg Resort & Golf Club Room Rate: $165/night http://moebiussyndrome.org/conference/ About the Venue: The Vinoy® Renaissance St. Petersburg Resort & Golf Club is a beautiful hotel, located right on the marina in St. Petersburg and Beach Drive, a street with many restaurants, cafes and shops. When the Vinoy opened in 1926, it quickly became one of the country’s most prestigious and coveted getaways for the world’s rich and famous families, along with Hollywood stars, celebrities, presidents and authors. Today, the Vinoy is one of St. Petersburg’s most spectacular waterfront resorts. The resort was recently named as one of the “500 Greatest Hotels and Resorts in the World” by Travel & Leisure Magazine. And, readers of Condé Nast Traveler magazine have ranked The Vinoy as one of the “Best Places to Stay in the Whole Wide World.” The Moebius Syndrome Foundation has worked hard to negotiate a very reasonable rate for sleeping rooms. This will make a fantastic vacation destination for you and your families. The hotel is minutes from the Salvador Dalí Museum and minutes from Tropicana Field, if you want to catch a Tampa Bay Rays baseball game! Or you can visit one of the many, many Florida beaches. If you are a golfer, there's an 18-hole private golf course or if you prefer there is a full-service day spa. There is a gym on site that oﬀers free yoga, spinning and other classes throughout the day. And yes, there's a pool! Photos courtesy The Vinoy® Renaissance St. Petersburg Resort & Golf 10
Extending Your Stay? Tampa/St. Petersburg is an amazing location and if your family is planning a vacation around the conference, there is plenty for you to do! Check out www.visittampabay.com for ideas. You may want to look into the Tampa Bay City Pass. CityPASS Key Features Get admission to 5 top Tampa Bay attractions Take your time—CityPASS is valid 9 days. Skip many ticket lines Choose shipped booklets or instant email delivery. More conference information will be shared shortly. Visit http://moebiussyndrome.org/conference/ for updates. Photos courtesy Visit St. Petersburg/Clearwater
NEED HELP FUNDING YOUR TRAVEL TO THE CONFERENCE? The Moebius Syndrome Foundation oﬀers conference sponsorships for first time attendees with financial need (adults with Moebius syndrome or parent/caretakers of a child with Moebius syndrome). A limited number of scholarships are available to help pay for registration and/ or hotel or travel are oﬀered for each conference. Look for the announcement in the coming months! You may qualify for state funding to subsidize Moebius Syndrome Foundation Conference expenses. Most states have funds available for families attending educational meetings or conferences through the state department of developmental disabilities: http://www.ccakids.org/statefunding.html. Thank you to the Children’s Craniofacial Association for this listing. Another option might be to start a GoFundMe page, where you can ask members of your family and community to help defray the travel costs to the conference. WANT TO HELP A FAMILY ATTEND THE CONFERENCE? Has the conference changed your life? You can make a donation to help a family attend the conference in St. Petersburg. Any amount will help and is appreciated!
Moebius Syndrome Foundation News May 2017
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