Lina Crnic Institute’s Dr. Lina Patel Keynote Speaker at Midlands Gala

For the fifth consecutive year, the Down Syndrome Alliance of the Midlands–GLOBAL joint “Building the Future” gala in Omaha, Nebraska, was a HUGE success – raising needed funds for amazing local programs and life changing research. Guests were thrilled to hear from world-renowned behavior expert, Dr. Lina Patel, of GLOBAL’s affiliate, Linda Crnic Institute, who shared that funds raised at the event change lives locally – through programs like the Alliance’s Down Syndrome Education Series, adaptive swim, and cooking programs, and more – as well as nationally and internationally.

Dr. Patel shared how every dollar given at the gala has a tangible benefit when it comes to elongating life and dramatically improving health outcomes for people with Down syndrome with transformative, life-saving studies of immune disorders, Alzheimer’s disease, hearing, metabolism, and more.

Dr. Patel provided updates on Crnic’s groundbreaking clinical trial of JAK-inhibitors in adults with Down syndrome which showed the following remarkable results:

  • 86% of trial participants showed improvement in atopic dermatitis     
  • 78% showed improvement in alopecia areata                                   
  • 75% showed improvements in psoriasis
  • 58% showed improvements in hidradenitis suppurativa

Remarkably, 2 patients with Down Syndrome Regression Disorder saw their symptoms reversed, leading to an NIH-funded study of three potential treatments for the Disorder. Trial recruitment for that study is closed, and data analysis began in May.

Dr. Patel shared that a trial of the JAK-inhibitor in people with Down syndrome ages 6-22, will launch soon at Crnic. The purpose of the study is to understand the safety profile and efficacy of early JAK inhibition in individuals with Down syndrome, with the goal of improved outcomes and neurodevelopment. The Crnic Institute also has current studies on early learning and biology, hearing, chronic constipation, early health and motor abilities, communication and play in those with Down syndrome, she noted.

In addition to learning about research, Dr. Patel encouraged families to get involved by participating in Crnic’s Human Trisome Project and by joining DS-Connect®, the National Institutes of Health Down Syndrome Registry.

Finally, Dr. Patel thanked the Down Syndrome Alliance of the Midlands, under the direction of Executive Director Elizabeth Draney, and those in attendance for their generous giving. Over the last 5 years, the gala has raised $50,000 to help update and expand the GLOBAL Medical Care Guidelines for Adults with Down Syndrome. In total, this year’s gala raised over $185,000 to support programs for those with Down syndrome in greater Omaha, as well as the Adult Guidelines. GLOBAL is proud to partner with the Alliance on this amazing evening of fun, learning, and investment in the future of our community!

   

                    

                                                                                                                                                 

 

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