Officers & Leadership

 
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Laura Badmaev (Chair) is the Founder and Chair of the ASXL Rare Research Endowment Foundation and mother of Alex, who has Bohring-Opitz Syndrome (ASXL1). She is passionate about supporting evidence-based research and improving management of care for ASXL families.  Laura was born in the New York metropolitan area and relocated to southern Maine in 2013 with her husband, Michael, and their children, Alexander and Abigail.  She has a B.S. in Operations Research & Industrial Engineering from Cornell University, and MEng in Systems Engineering and Graduate Certificate in Engineering Management from Stevens Institute of Technology. She has completed a Certificate in Leadership Excellence from Harvard and is certified in Scaled Agile Framework as well as Six Sigma.  Laura worked for the Department of Defense as an Integrated Logistics Support Manager and Research & Development Systems Engineering Advisor for several years.  After completing her masters, she changed careers to work for American Express where she has served in various consultative and capability development roles for over a decade.  Laura enjoys traveling and building relationships with individuals from around the world and learning about different cultures.

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TBD, Vice Chair

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Eulalia Badmaev (Research Grant Committee) is the proud grandmother of Alexander, who was born with Bohring-Opitz Syndrome.  She completed her training in Pediatric Surgery at the Medical School of Bialystok, Poland, and worked at the Children's Hospital in Warsaw.  After leaving Communist Poland and relocating to America about 25 years ago, she pursued a career in research.  Currently she serves as the Head of the Histology Laboratory at the New York State Institute for Basic Research in Staten Island.  Eulalia (also known as Lala) enjoys bootcamp gym class and spending time with her beloved husband, Vladmir. 

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Madalina Magureanu (Treasurer) grew up in Romania where she pursued studies in Marketing and International Business. She has a Master's degree in Marketing Communication from the Academy of Economic Studies in Bucharest and a Master's degree in Management from the University of Auvergne, France. Madalina moved to Canada with her husband in 2009 and now live in beautiful British Columbia with their two boys, Mark, 5 and Tristan, 2. Tristan was diagnosed with Bohring-Opitz Syndrome when he was 1 and a half years old, which prompted Madalina and her husband to connect with the BOS community and help advance awareness and understanding of this very rare condition in any way they can. Madalina has been working in the professional fundraising industry in Canada and is happy to lend her skills towards advancing the ASXL Rare Research Endowment Foundation's mission.

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TBD, Secretary

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Colleen Raccioppi (Marketing) is an and accredited public relations practitioner with 18 years of experience in the marketing and communications profession. She creates researched-based, results-driven campaigns, communications programs and brand strategies for all audiences across every medium. In her role as Marketing Communications Senior Manager at a leading medical device manufacturer, she crafts the company’s messaging, communicates corporate initiatives to domestic and international partners and builds relationships with global offices and distributors around the world.

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Jerry Sebastian (Fundraising) grew up in Bronx, NY where he attended St. Raymond's HS for Boys.  He then studied Marketing at Westchester Community College and later Iona College. From 1994 until 2007 he worked for Blockbuster Video in Store, District and Regional Management in the Metro NY area. He later served as District Manager for Radioshack in Westchester County from 2008 until 2012. In 2012 Jerry purchased a Franchise Agreement with Uncle Louie G Italian Ices and Ice Cream and currently operates the franchise out of Sebastian, FL where he lives with his wife Gina, who he has been married to for 10 years.

Gina's sister Kristy gave birth to her first son Vincent in 2009. Jerry had an immediate bond with him. Vincent was diagnosed with Bohring-Opitz Syndrome in January of 2017. Since the diagnosis, Jerry has taken an active role in networking with other families affected and striving to raise awareness.

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Sheri Bermejo (ASXL1 Parent Support) was born and raised in Los Angeles, California.  She has a degree in Urban Studies and Planning from the University of California, San Diego, and works full time as a City Planner.  During her college years she studied abroad at the University of Madrid (La Universidad Complutense).  It was in Madrid where she fell in love with her husband, Carlos.  After spending several years living and working in Madrid, Sheri and her husband married and moved back to California in 2003.   They have two girls, Carmen (6 years old) and Eva (3 years old). Through social networks, a nurse at Children’s Hospital of Los Angeles was able to help diagnose Eva with Bohring-Opitz Syndrome.  Sheri was able to learn more about Bohring-Opitz Syndrome (BOS) from corresponding with mothers on the Bohring-Opitz Syndrome Facebook page.  If mothers from around the world didn’t share their experiences, they would have never been able to diagnose Eva.  Sheri continues to share Eva’s story in hopes that it will inspire others to never give up.   She also is a firm believer in family centered care, especially when caring for a chronically ill child.  In April 2013, Sheri presented Eva’s story to a team of physicians at Children’s Hospital Los Angeles at a Palliative Care and Comfort Conference. In her free time, Sheri loves spending time with her family and rediscovering life through the eyes of her children.

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Sünne van Gemert-Godbersen (ASXL1 Parent Support, CM, COO) has a master degree in Urban and Regional Planning from “Technische Universität Berlin”, Germany and worked in retail estate fund (marketing). After 10 years Berlin, the love let her moved to The Netherlands. Together with her husband Rob they have four children: Okke is born 2007 and become wings 2013. He has a younger brother (2009) and younger twin brother and sister (2010). Okke was born with Bohring-Opitz Syndrome. “When we got this diagnosis, just three weeks after his birth, we were told that there were less than 20 children in the world with this syndrome that had been documented in scientific articles. Three years later the Radboud Nijmegen Medical Center discovered the gene that was responsible for this disease: de novo mutation in the ASXL1 gene. Our son, Okke, contributed to this study, and this mutation was also found in his DNA. It was because of this discovery that I decided to set up a group on Facebook with the hope that if there are no children with BOS in the Netherlands that maybe there was the possibility to get in touch with other families worldwide. Now, our international parent support group has grown to more than 100 families from all over the world. It is our goal that by spreading and increasing knowledge about  Bohring-Opitz Syndrome, medical professionals, parents and caregivers will provide better medical treatment for all these beautiful children in the future. They deserve it! Okke is no longer living, … but it is through this work that he lives on!”

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Teresa Locklear (ASXL2 Parent Support) was born and raised in Asheville, NC. She received a degree in Hotel/Restaurant Management from Asheville-Buncombe Technical Community College. She met her husband, Carl, while attending school and they were married in 1996. She worked as a Deli/Bakery Manager for Bi-lo grocery store until she and her husband moved to California. Their oldest son, Zachary, is currently serving in the Army. He and is family are stationed at Ft. Hood, Texas. Their middle child, Brianna, will graduate high school in 2020 and is very active in the dramatic arts field. Their youngest child, Issac, was born in 2007 and diagnosed with Shashi-Pena Syndrome in 2016. Teresa has been an active participant of the Undiagnosed Disease Network's PEER group to try and give support and share information for all those that have attended the UDN.”

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Dawn Machenheimer (ASXL2 Parent Support) is an Ohio native currently residing in Columbus Ohio with her husband, Andy, and their two children, Foster and Drew. In 2016, Foster was diagnosed with an ASXL2 genetic mutation now known as Shashi-Pena syndrome. At that time, there were only 6 diagnosed cases of the ASXL2 mutation.  Dawn is currently working to create and build an online support group that will connect families of children who have been diagnosed with the ASXL2 mutation (Shashi-Pena syndrome).

Dawn serves as a Family Team Captain with the March of Dimes-March for Babies. In the past 5 years they have been recognized as a Top Ohio and National family team with the March for Babies. Dawn and her family are also active with the Special Olympics Young Athletes Program and she is an active parent advocate with the Childhood Appraxia of Speech Association.

Dawn is a 19 year veteran of the financial services industry specializing in retirement planning and education. She has served as Regional Vice President at Jackson National Life since 2005.  She graduated with a BBA in Business Finance from Ohio Universtiy in 1999.

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Caitlin Calder (ASXL3 Parent Support Group) lives in Houston Texas with her husband, Chad, and their two children, Archer and Della. In 2012, Della was the third child diagnosed with an ASXL3 genetic mutation, also called Bainbridge-Ropers Syndrome (BRS), in 2012. Caitlin worked with Dr. Bainbridge, who first isolated the ASXL3 mutation, to create an online support group for families of children who have been diagnosed with BRS. Caitlin is a strong proponent of research centered around BRS and is, or has been affiliated with, research at Baylor College of Medicine, Texas Children’s Hospital, Harvard Medical School, and Simons Foundation. Caitlin graduated from University of Houston in 2016 with a B.A. in Communication Sciences and Disorders and is now a graduate student and will earn an M.A. in Communication Sciences and Disorders in 2019.

Caitlin was a team captain for three years in the American Cancer Society’s Relay For Life from 2009-2012. She organized volunteers, planned and executed fundraising events, and participated in the events as a cancer survivor. Caitlin volunteered with the Boy Scouts of America from 2012-2016 as Cub Scout den leader and a unit commissioner. She was responsible for administrative and leadership duties and also assisted troop leaders in adapting the BSA program for children with special needs. She also served as a children’s Sunday school vice president (2014-2016)  where she carried out administrative duties, trained teachers, prepared and presented lessons to children, and served as a consultant for program adaptations for children with special needs children.