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Over forty-four years ago my nominee and her husband moved to Saint Louis to begin new careers at Washington University. She received both undergraduate and graduate degrees at UCLA, but it has been her work in our community’s nonprofit sector that has given her the greatest “degree” of satisfaction of all.
For over twenty-five years she served as a board member and executive committee member (vice president) of the St. Louis Jewish Community Relations Council, a 501c3 organization which is a constituent agency of the Jewish Federation. Those years provided her with many opportunities to make a difference in our St. Louis multi-cultural community, both on the local level and internationally. One meaningful JCRC project in which my nominee took a leadership role was the development of the Saint Louis-Riga, Latria sister-community program. My nominee served as chair of the Saint Louis-Riga Sister Community Committee of the JCRC and was the lay leader for three St. Louis missions to Riga in 1993, 1995 and 2001. A notable outgrowth of the sister –community project was a medical partnership between Barnes-Jewish Hospital and three hospitals in Riga. This agreement was developed through a partnership grant from the American International Health Alliance/USAID. The St. Louis Barnes-Jewish and Children’s Hospital US/AID program with Riga was one of the most successful, long running medical exchange programs and remains a model for other similar programs that the United States promotes to improve conditions in developing countries.
My nominee’s leadership and drive has also come to the fore through a more personal commitment. Her son, now thirty-seven years of age, was diagnosed with Fragile X Syndrome at St. Louis Children’s Hospital in February, 1981. Fragile X affects people of all nationalities, ethnic origins, races and religions. Thirty years ago almost no one knew about Fragile X Syndrome yet in the United States alone, over one million individuals are impacted be some Fragile X-associated condition. It is an Autism Spectrum Disorder with a variety of autistic-like behaviors, learning disabilities, behavioral issues, attention deficit-hyperactivity common to many different conditions. My nominee has been on the forefront of the challenge to educate the general public, to promote awareness about this common though largely undiagnosed condition. This includes providing current information on treatments, characteristics, and educational interventions to teachers, therapists, and medical professionals.
In 1992, my nominee founded the Fragile X Resource Center of Missouri. She has worked with genetics departments at St. Louis Children’s Hospital & Barnes-Jewish Hospital-Washington University, Cardinal Glennon Hospital-St. Louis University, and University of Missouri-Columbia Department of Child Health. The Fragile X Resource Center is a 501 (c) (3) Volunteer-run, not-for-profit organization incorporated in the state of Missouri. Its mission is to mobilize the local community to provide educational and emotional support, to promote public and professional awareness, and to support research toward improved treatments and ultimately cures for Fragile X. In July, 2008 my nominee orchestrated the 11th Biennial International Fragile X Conference at the Sr. Louis Hyatt Regency Hotel with attendance of approximately 1000. Participants included families, therapists, researchers and scientists in the field. Under her direction the Resource Center also sponsors an annual symposium at Washington University for teachers, speech and language pathologists, therapists, medical professionals, and families, bringing outstanding nationally recognized speakers in the field.
In 2008, after more than 16 years, my nominee stepped down as president of the Resource Center, but remains on the executive committee. She recently completed her six year term as a member of the Board of Directors of the National Fragile X Foundation and serves on several national committees.
While my nominee is involved with many worthwhile organizations, she remains most deeply committed to carrying forward the message of Fragile X. She is motivated by the knowledge that there are few people working in the field. This is partly because it remains unknown, even though its symptoms and conditions affect a significant population here and world-wide. Research into understanding Fragile X will offer major insight into autism, cognitive function, and other central nervous system disorders. Her drive to help her son living with Fragile X Syndrome will, as a result, help children living with these other illnesses as well.
My nominee’s efforts to help lift the stigma from children living with disabilities in the community branched out in another direction as well. For thirteen years she served as a volunteer puppeteer for Kids on the Block, a nationwide program utilizing life-sized puppets, each with a different disability. She traveled with a troupe of seven puppets to public and private schools all over St. Louis County. These puppets were created primarily for presentations to third- and fourth- grade students to help them and their teachers learn about students who have disabilities. She also provided in-service programs for St. Louis City and County school administrators and named this service the AUA information plan: Awareness, Understanding and Acceptance. This program was designed to encourage students of varying levels of abilities to share a classroom, to study together and to become friends, both at school and in the larger community. “Children, she has said, “who learn at an early age about differences develop into sensitive, caring adults in the future. “
My nominee recently completed her term as president of the Woman’s Club of Washington University. She had the privilege to serve the Club in this role during its Centennial Celebration. One of the Club’s major accomplishments in 2010 was the establishment of the Centennial Endowed Scholarship in Washington University’s University College. Students in University College are generally older students working full time or raising families who finally have the opportunity to return to evening classes and slowly work toward a degree that will last them a lifetime.
My nominee’s leadership, dedication and commitment, most specifically in the area of childhood disabilities, are an inspiration to the nonprofit community. The programs she created to educate children who live without disabilities, to understand and respect those with disabilities, are outstanding in both concept and impact. These accomplishments along with the other leadership positions she has held in her nonprofit career, make adding the words “Woman of Achievement” to my nominee’s name a natural progression of all she has done and continues to do to serve our community.