MOEBIUS SYNDROME FOUNDATION NEWS
Moebius Syndrome Foundation - The Home for the Moebius CommunityTM Fall 2019
In the Beginning. . . 25 Years of the Moebius Syndrome Foundation By Vicki Mc Carrell MSF board with Francis Collins, MD, PhD, Director of the NIH in Philadelphia 2012.
It is said that ‘Coincidences are God’s way of being anonymous.’ That seemed to be the case when Lori Thomas and I found each other in 1991. Our kids both had Moebius syndrome, and at the same time we both started searching for one other person in the world who had the rare neurological condition that left Chelsey and Sean without a smile. It was through our letters to Forward Face in New York that we were connected and realized that we lived only 4 miles from each other in Los Angeles. Thus it began, the get-togethers, the newsletters, Chelsey’s groundbreaking smile surgery, meeting Rich and Cathy Campbell from New York at the first Moebius Syndrome Conference in Los
Researchers defining Moebius syndrome in 2007
“On page 4 you will find are some of the highlights of this wonderful Foundation! What’s Inside
Letters from the President & Executive Director Conference and Mini-Conference Updates Moebius Syndrome Awareness Day Recap Employment: Tips for Great Job Interviews Thank You
Angeles in 1994. . . On page 4 you will find are some of the highlights of this wonderful Foundation whose mission remains the same as the day it began: ‘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.’ Thank you for joining us on this journey. . .
Moebius Syndrome Foundation News Fall 2019
Moebius Syndrome Foundation PO Box 147 Pilot Grove MO 65276 Phone: 844-MOEBIUS email@example.com www.moebiussyndrome.org
A Letter from our President Dear Friends,
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 Dina Scalone Moebius Syndrome Foundation Board of Directors Vicki McCarrell, MA President Kevin Smant, PhD Vice President Rebecca L Maher Secretary Jacob Licht Treasurer Kelsey Ferrill Monica Woodall Steven Maldonado, MBA Paula Keebler Santana Bryn Webb, MD Nicole Kovite Zeitler, JD Lori Thomas, Emeritus Marcia Abbott, Emeritus Roland Bienvenu, Emeritus Matthew S. Joffe, Emeritus Moebius Syndrome Foundation Scientific Advisory Board Kathleen Bogart, PhD Oregon State University, Corvalis, OR Gregory Borschel, MD The Hospital for Sick Children, Toronto, ON Hollis Chaney, MD National Children’s Health Services 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 Icahn School of Medicine at Mount Sinai, New York, NY Phil McClure, MD University Orthopedic Center, UT Marilyn Miller, MD University of Chicago, IL Rhonda Robert, PhD University of Texas, MD Anderson Cancer Center, Houston, TX Renee Roy Hill MS, SLP-CCC Crossroads Therapy Clinic, TalkTools Therapy, New Braunfels, TX Sara Rosenfeld-Johnson MS, SLP-CCC TalkTools Therapy, Charleston, SC Ronald M. Zuker, MD The Hospital for Sick Children, Toronto, ON
Moebius Syndrome News 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 Syndrom News. The newsletter is on the website at: www.moebiussyndrome.org
Fall is an exciting time as children and young adults with Moebius syndrome return to school and college. We wish all of you a great year of learning and growth.2019 is the 25th anniversary of the Moebius Syndrome Foundation, which became a 501 c 3 not for profit organization in 1994 thanks to Cathy and Rich Campbell. We’ve experienced wonderful growth in those 25 years, and now help thousands of individuals who live with Moebius syndrome worldwide through welcome packets for new contacts, college scholarships for young men and women who have Moebius syndrome, newsletters, conferences, scientific symposiums, research symposiums, attendance at professional conferences, and funding for research. As a history buﬀ, I feel it is important to remember and thank those who helped us get to this point. There are too many to mention individually – but you know who you are and we love you. None of this tremendous work could happen without your support. As we move forward into the next 25 years, thank you from the Moebius Syndrome Foundation Board of Directors both past and present, to our Scientific Advisory Board, to our researchers, to our donors, to those who educate others about Moebius syndrome and to the incredible individuals who live their lives with paralyzed faces. We admire you! Sincerely, Vicki McCarrell President/Co Founder
A Letter from our Executive Director
Dear Friends, It has been wonderful getting to know this community over the past year! What an exciting time to be part of this foundation as we celebrate our 25th anniversary! This community has accomplished so very much in 25 years! I am especially thrilled to announce that the Foundation’s investments in critical research have exceeded 1 Million dollars! I invite you to celebrate our 25th anniversary with us by attending the national conference next June, attending a Moebius Syndrome Awareness Day event or contributing a gift of any amount to our 25th Anniversary Campaign. I can not wait to see what we will do next together! My best,
Dina Scalone Dina Scalone Executive Director
THANK YOU PORTLAND April 2019
November 8-9 2019 Ft. Worth, TX
The Portland Mini-Conference was a big success, thanks to the many volunteers, presenters, and research team. We had a full day of general sessions and child care program, and even had a special visit from Rojo the Therapy Llama! We then wrapped up the day with a fun family dance. It was a great day!
Ft. Worth Mini-Conference
Dates: November 8-9, 2019 Educational and Networking sessions, family friendly activities including a Rodeo at the Ft Worth Stock Yards! $50/ Adults $25 Children Register Today at moebiussyndrome.org/events
National Conference 2020 Minneapolis, Minnesota The Moebius Syndrome Foundation Conference is held every two years and is the pinnacle event for the organization. Attracting more than 400 people, the meeting brings together the Moebius community to learn about the latest scientific advances, educational sessions, medical consultations with the nation’s leading physicians and social activities. Registration will open in February 2020 Minneapolis Marriott Northwest Room Rate: $149 + Tax Child Care Available, Professional Keynote and Medical Speakers,Social Events, Educational Sessions, Group Chat Sessions, Dinner and Talent Show Interested in being a sponsor or volunteer at any of these upcoming events? Please email Jenny Whitman at email@example.com Moebius Syndrome Foundation News Fall 2019
HISTORY OF THE Foundation
1994: First Moebius Syndrome Conference is held in Los Angeles with 75 people from 26 states and Canada in attendance; First newsletter is mailed to 30 families; Rich and Cathy Campbell secure 501 c 3 status for the organization; Vicki receives $10,000 from Maybelline for an article she wrote about Moebius syndrome for ‘Ladies Home Journal.’ All of the money goes to the new Moebius Syndrome Foundation.
1996: Second conference is held in Tarrytown, NY; Chelsey Thomas has smile surgery with Ronald M. Zuker, MD at Kaiser Permanente Hospital in Woodland Hills, CA, and receives worldwide coverage, is featured in ‘People’ magazine as well as a host of other magazines, newspapers and TV shows. Kaiser has to install a separate phone line to take all of the calls from people with Moebius syndrome and parents of children with Moebius syndrome who realize they are not alone. The mailing list grows to 150.
1998: Third conference is held in Toronto, followed by conferences every other year the 3rd weekend of July; 13 conferences have been held to date with the 14th planned for July 2020 in Minneapolis.
2002: Scientific Advisory Board is formed. 2004: MSF receives a $10,000 grant from the Christopher Reeve Paralysis Foundation to produce an educational video about Moebius syndrome.
2006: Vicki meets with the heads of 3 institutes at the NIH in Bethesda, MD, to discuss how to encourage research into the genetics of Moebius syndrome.
2007: MSSF receives a grant from the NIH for the first Moebius Syndrome Research Conference held April 24 & 25 in Bethesda; 31 researchers from 9 countries attend; definition of Moebius syndrome is developed (both the 6th and 7th cranial nerves must be aﬀected to be classified as Moebius syndrome)
2010: Second Research Symposium is held the day before the July 2010 4
2012: 10th Conference is held in Philadelphia; Francis Collins, MD, PhD, Director of the NIH, is the keynote speaker.
2014: Elizabeth Engle, MD; Ethylin Wang Jabs, MD; and Irini Manoli, MD, PhD, secure a U01 Interdisciplinary Grant from the NIH to study the genetics of Moebius syndrome; MSF receives a ‘Quality of Life Grant’ from the Christopher and Dana Reeve Foundation for the 2014 MSF conference in Bethesda.
2015: First part time paid executive director is hired. 2016: $2000 college scholarships are awarded to 4 students who have Moebius syndrome.
2017: College scholarships are awarded to 3 students who have Moebius syndrome.
2018: College scholarships are awarded to 4 students who have Moebius syndrome.
2018: Dina Scalone is hired as part time paid executive director; Jenny Whitman is hired as part time event and conference manager.
2018: 438 people attend the 13th Moebius Syndrome Conference held in St. Petersburg, Florida; 6th Research Symposium is held.
2018: MSF Board members volunteer to host a booth at the American Academy of Neurology Conference in Los Angeles and the American Council of Medical Genetics conference in Seattle.
2019: 4 undergraduate and 2 graduate scholarships are awarded to young men and women with Moebius syndrome.
2019: Over 2800 people are now on the mailing list; 10 member Board of Directors; 16 member Scientific Advisory Board; Medical Registry is developed in collaboration with NORD. Foundation exceeds $1.1M in research funding.
2020: 14th Moebius Syndrome Conference and Research Symposium will be held in Minneapolis
Moebius Syndrome Foundation News Fall 2019 5
NORD UPDATE December of this year will be the end of my 9 year tenure on the Board of Directors of NORD (National Organization for Rare Disorders). It has been an honor representing the Moebius Syndrome Foundation. I have met and learned from many leaders in the rare disorder community, as well as staďŹ€ from the NIH and FDA, have attended numerous NORD events, and have deepest respect for the dedicated NORD staďŹ€. In October I will attend the Rare Diseases and Orphan Products Breakthrough Summit in Washington DC as well as the NORD Patient Organization Membership Meeting where over 270 other member organizations will come together to share our stories. We are happy to announce that the Moebius Syndrome Foundation has signed an agreement with NORD to develop a patient registry so that the Foundation will now manage the data of our members and be able to share the data with interested researchers. The data that has been gathered by our wonderful researchers will be downloaded into the registry with appropriate consent and individuals/families will be able to enter data directly into the registry as well. Dr. Ethylin Wang Jabs and Dr. Bryn Webb have been instrumental in helping bring this project to fruition. Watch for more information on the registry in the weeks and months to come! Vicki
Thank you to all of our donors! Thank you to all of our donors! Because of your generous contributions, the Moebius Syndrome Foundation was able to award several educational scholarships in 2018, fund more than $156,000 in research projects which will help identify the Moebius syndrome gene(s) and financially support many regional events so that families across the United States could meet. Donations listed through August 31, 2019. Thank you for your donations. It is with your generosity that we can continue supporting 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. In Memory of Bill McDaid Linda McDaid In Memory of Burton Milow Mary Minow In Memory of Hannah Jade Devine Mark & Susan Knox In Memory of Kaylee Grace Roberts Lush
Glenda Lush In Memory of Lane Craig George & Donna Nickerson Jim & Betty Brady Karen Jones Karlynn Craig Mary Lou and Tim Schubert Michele Smith Trevor and Carol Elmquist Robbie Cordes William Elmquist In Memory of Michael Fuller Graham Jean Graham In Memory of Paul Brailsford Brent & Janice Choate Lynne Rigoni Candice Reed Marla & Gene Sharpe Shelly Ann McClennin In Honor of Addison Garvey Backyard Brine In Honor of Allie Ray Katie Elze In Honor of Benjamin Becker Linda & George Becker Western EcoSystem Technology, Inc. Walter Meisner In Honor of Claire Peppin Ellen Skinner Cynthia L Jvern
In Honor of Mathias Santana Paula and Ivan Santana Salesforce Nicolas Hater Pablo Menendez In Honor of Elena Trecanao Yvette Yeager In Honor of Nicolas Jennison Sister Nuala Ryan Sonia & Ed Jeﬀers Toni Shewell
In Honor of Erin Hecker Maude Fribourg
In Honor of Faith Dressel Marsha Gardner In Honor of Ione Idel David Idell Julie Yoon In Honor Miraim Licht Bobby and Chelle Medow
In Honor of Rebecca & Jessica Maher Novartis Pharmaceuticals In Honor of Steve & Mary Anne Jennison’s 40th Anniversary John Berggren Julianne Wehan Nancy Maben William Shewell In Honor of Kevin Nievesmassol Debra Barlekamp Kacie Nievesmassol Kyle Brailsford Mary Ann & Robert List Sherry Ann McClennin Tom Laughlin In Honor of Willem Wuebben Brooke Stelzer Ellen Skinner Jablon Foundation
Ann Sandve Amy & Marnie Owen Anna Jeﬀers Arthur & Katherine McCaughan Babak Azizzadeh, MD Barbara Pottle Blair MacGregor Brooke McKinney Delia Groll Douglas Koch Emma Masset Gareth Roberts Gary & Carleen Wargowsky Gina Alvino Hall Prairie Intermediate School Jan Law Jared Long Judith Ciccone Kari Storm Karie Keller Karla Estrada Kathleen Hugel Laura Duke Linda Ciccone Lydia De Rios Mariska Ropog Mary Ann Myrand Mary Lerner Meredith Jones Michael Colton Mona Thabit Monte Tutschek Patricia Franklin Paul & Kristine Santilli Trudy Deane Robert and Gail Naworal Robert Chow Ronald Noon Sherri Kennedy Network For Good United Way of Metro Chicago IUOE Local #12 Charity Golf Lilly Endowment Texas Children's Hospital The Facial Paralysis Institute
Moebius Syndrome Foundation The Home for the Moebius CommunityTM P.O. Box 147 Pilot Grove, MO 65276 Address Service Requested
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Together, we have impacted the lives of children, adults, and families living with Moebius Syndrome! Children like Mona, whose doctors in Guatemala were able to consult via Skype with top Moebius Syndrome medical experts at Mount Sinai Hospital in New York. Families like Nicole’s, who have found a support network of families managing the needs of medically complex children.
CAN WE COUNT ON YOU?
Adults like Kelsey, who never met another person with Moebius syndrome before attending one of our conferences and now have become advocates for people with facial diﬀerences. Because of YOU more than $1,000,000 has been invested in critical research, 11 young adults with Moebius syndrome have been awarded college scholarships, and the Foundation has hosted 13 semi-annual conferences and 6 Research Symposiums!
Here is to the next 25 years! We can not wait to see what we do next together! Can we count on YOU to support the next 25 years? $25 = 4 Welcome Packets sent to new members $250 = 1 Scholarship to a National Conference $2,500 = 1 College Scholarship for an individual living with Moebius Syndrome $25,000 = One research project funded DONATE TODAY! Return the enclosed envelope or visit moebiussyndrome.org