I hope you are safe and healthy this summer! With all that you do for your families, you may not be surprised to hear that only 5% of people with Down syndrome have access to one of the few specialty clinics throughout the US. That means that nearly 200,000 may be missing out on important screenings and evaluations because their healthcare providers are not up to date with the latest medical recommendations and research. We are so excited to be the Founding Philanthropic Supporter of the long-awaited Down Syndrome Clinic to You (DSC2U) and to kick-off the launch on August 11 with a Facebook LIVE at 1 pm ET featuring Dr. Skotko himself!We invite you to join us in sharing this incredible new resource with your families by amplifying the LuMind IDSC LIVE event and the DSC2U social media posts, newsletter article, and photos provided in the DSC2U Toolkit.
You may know that DSC2U was created by Dr. Brian Skotko, MD, MPP, and the clinical and research teams from the Down Syndrome Program and Lab of Computer Science at Massachusetts General Hospital, a not-for-profit academic hospital affiliated with Harvard Medical School. The team worked in close consultation with key stakeholders, including parents and caregivers of people with Down syndrome, representatives of Down syndrome advocacy organizations, primary care physicians, and national medical experts. When caregivers access DSC2U online, in English or Spanish, they will be asked to identify current symptoms in their loved one with Down syndrome along with any past medical or behavioral diagnoses and any recent blood work or diagnostic testing. DSC2U also contains optional questions about nutrition, education, therapies, life skills, and community resources. Their responses will be analyzed by a computer, based on state-of-the-art guidelines designed by national Down syndrome experts.
The caregiver will instantly receive two personalized documents: one for themselves and one to share with their primary healthcare provider. These documents contain customized suggestions that are designed to help their loved one get healthcare tailored to their own specific needs. The documents are based on the caregiver’s answers to the DSC2U survey and draw on national guidelines for the care of persons with Down syndrome. DSC2U does not offer direct access to physicians at Massachusetts General Hospital, nor does it offer caregivers access to MGH physicians by e-mail, text, phone, or videoconference. DSC2U offers instead the most current recommendations and resources to caregivers through personalized online documents.
For $49, families can access DSC2U once. These fees will cover the cost of expenses associated with maintaining and improving this resource.Because we realize that this cost may be prohibitive for some families, Down syndrome organizations are invited to underwrite a portion of this cost by purchasing “discount codes” for DSC2U. These codes may be shared with families who might not otherwise be able to afford DSC2U, or in any way that an organization sees fit.Please contact Michelle Slape,firstname.lastname@example.org, if your organization is interested in purchasing these codes.
I hope you are as thrilled as we are to connect families with this unique healthcare resource! Please contact us with any questions or ideas you may have for DSC2U.
LuMind IDSC, 20 Mall Rd. Suite 200, Burlington, Massachusetts 01803