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2017 Year in Review

January 1, 2018

On June 22, 2011 Claire, our inspiration and driving force, was diagnosed with Rett Syndrome. From that day forward, it has been our focus to do everything in our power to help rid the world of this horrific disorder. Just a few short months after Claire’s diagnosis, Claire’s Crusade was founded with a three-pronged mission – increase awareness, provide resources for families and support cutting edge research efforts to develop treatments and ultimately a cure for Rett Syndrome.

To support our Mission, we leverage our Facebook page and our website throughout the year to increase Rett Syndrome awareness. Several of you have a purple Claire’s Crusade wristband on your wrist and/or a Claire’s Crusade magnet on your vehicle. Others may have heard one of our PSAs running on a local radio station. Those of you who participated in our Race Against Rett Syndrome at the Cleveland Marathon or made a purchase through our online Awareness Store are still wearing your Claire’s Crusade gear. Thank you all for helping increase awareness!

Many have made generous financial contributions to Claire’s Crusade as well and these contributions have made it possible for us to make a significant and positive impact on the lives of girls held captive by Rett Syndrome. From those who contributed through the United Way, to those who chose donations to our cause instead of gifts for yourself, to those who collected change at school, to those who shop Amazon Smile, to those who contributed out of your own hard earned money - we thank you! Your gifts large and small have made it possible for us to make the following announcements:


Claire’s Crusade is proud and honored to contribute an incremental $20,000 in support of the ongoing transformational research efforts championed by Rett Syndrome Research Trust (RSRT) and (formerly IRSF). This brings our total contribution to $100,000 program to date! The work that has already been done and the work that continues today under the leadership of these world renowned organizations fosters more than hope – it breeds confidence that effective treatment is on the immediate horizon, and that a cure is not far behind. It is with that confidence that we continue to partner with RSRT and during this historic time, a time when Rett Syndrome symptoms have been reversed in animal models and, for the first time, medicines are being tested. It is our intention that this contribution be one of many in an ongoing partnership between these fine organizations and Claire’s Crusade. Together, we can reverse Rett Syndrome and free girls held captive by its devastating effects.


Claire’s Crusade proudly contributes an incremental $5,000 to Rett University, bringing our total contribution to $40,000 program to date! During the spring of 2014, Claire’s Crusade partnered with Girl Power 2 Cure (GP2C), a Rett Syndrome nonprofit based in Florida, becoming a VIP Founding Member of Rett University. Rett University is a ground breaking e-learning platform specifically designed for educators and therapists of Rett Syndrome students to share their cutting-edge knowledge on how to support their students and push them to their highest levels of academic, physical and personal achievement. In addition to supporting the development of the platform itself, our contributions have funded scholarships and clinics as well as the development of tools and resources students with Rett Syndrome need to be successful at home, in the classroom and out in the community.

Additionally, our Co-Founder, COO Colleen T. Reilly was named to the Rett University Advisory Board in 2017 and will play an integral role in planning and developing goals for growth. Rett University fills an immense void in the education system by providing a mechanism for educators to access the tools they need to effectively teach students with Rett Syndrome and successfully unlock their potential and we are beyond excited to be at the forefront of its development and execution.


Claire’s Crusade also continues our partnership with the Rett Syndrome Center at the Children’s Hospital at Montefiore contributing $5,000 to expand the Alexandra Lewis Scholarship Fund. The scholarship recognizes that families may not have the resources required to travel to New York to receive proper care under the direction Dr. Aleksandra Djukic, MD, PhD and her highly specialized team. The fund sets out to help families that may be limited financially or geographically with travel expenses and make the dream of expert care a reality. This brings our total contribution to $40,000 program to date! Prior contributions expanded the Eye-Gaze-Based Attention Training study originally piloted in New York to Ohio and beyond with the goal of enhancing a child’s ability to concentrate to improve all aspects of their ability to learn and communicate in both academic and social settings. We are honored to have played an integral part in the study and to support the scholarship positively impacting the quality of life of the many who struggle with Rett Syndrome.


Claire’s Crusade

P.O. Box 31118

Independence, OH 44131



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