YOUR HELP IS NEEDED!

Act Now to Help Increase Funding for Down Syndrome Research Dear  DSAGSL Members and Friends, The DSAGSL is joining with the National Down Syndrome Congress and the Global Down Syndrome Foundation (GDSF) to strongly encourage you to take action now to help increase funding for DS research. The National Institutes for Health has issued a Request for Information regarding a national Down syndrome registry, research database and biobank.  Every e-mail counts!  A large, clear response is likely to lead to funding for these important projects. The deadline to respond is April 1st! What can I do? Take a look at GDSF's recommendations at the bottom of this note.  If you agree, send an original message, or cut-and-paste into the message provided below, and send your response to dsrdrfi@mail.nih.gov by April 1st. Use the Subject header:  "RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI" Please cc: the GDSF at nihresponse@globaldownsyndrome.org, so they can keep track of the responses. What if I need additional information? View one of Global Down Syndrome Foundation's upcoming 30 minute webinars on responding to this RFI:    Tuesday, March 29, 12:00pm MST Wednesday, March 30, 5:00pm MST  Sample Letter/Key Points Below is a sample letter of support, and below that some key points to consider: To Whom It May Concern: It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome.  We are pleased that the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard.  We support and agree with the Linda Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank.  Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome. Sincerely, (name) Key points to consider (provided by the Global Down Syndrome Foundation): ·        People with Down syndrome deserve The best medical care to reach their potential The best educational supports, tools and curriculum to reach their potential The best scientists working on long-term medical and cognitive issues that increase a healthy lifespan and potentially allow for increased safety ·        Without research There is no body of evidence to provide to the doctor's office, the teachers and school systems, the therapists or others who interact with people with Down syndrome ·        Examples to consider Sleep apnea Early onset of Alzheimer's Autoimmune disorders, increased risk for infection Average lifespan of a Caucasian with Down syndrome is +/- 60; for an African American with Down syndrome it's 36 Significantly higher risk of sexual and other abuse Evidence-base for best practices  Our Down syndrome community needs a national, centralized registry, research database and biobank in order to Connect people with Down syndrome and their families interested in participating in research to reliable and ethical research projects Manage meaningful clinical trials that have enough numbers in a study to have a conclusion Manage information resulting in clinical trials to the participants when appropriate Have economy of scale and quality control - back-up storage systems, alarms and remote paging, responsible personnel on call at all times, sources of funding Have research that leads to breakthroughs for people with Down syndrome medically and developmentally Attract the best and brightest researchers to dedicate their lives to people with Down syndrome Must exist to benefit people with Down syndrome Must protect the participants  ·        Ownership Samples and information are owned by the participants Hosted, but not owned, by a group managing the registry A Research Review board will Have oversight of the registry, research database and biobank Ensure the researcher has approvals, funding, and a sound plan prior to accessing the registry Have the power to grant/deny a researcher access to the registry Ensure researchers provide results to participants, care providers and post publication of their data Consist of participants (people with DS and their families), medical care providers, researchers, representatives from funding agencies