The President’s budget cuts CDC funding for Fragile X research and awareness.
Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to express support for funding the CDC’s Center for Birth Defects and Development Disorders at least the same as Fiscal Year 2017. And sample email, which can also be used for talking points, is below.
Rep. Cole: DC office – 202-225-6165 and email. Phone calls to Rep. Cole’s office are encouraged at this point because the subcommittee is expected to work on the bill on Thursday, July 13, 2017.
Sen Blunt: DC Office – 202-224-5721 and email.
Dear Rep. Cole (or Senator Blunt):
I am from _______. I am writing to you today because my family is affected by Fragile X. (insert specifics here in a sentence or two). Both the NIH and the CDC fund critical programs for Fragile X research, awareness and other public health programs.
Based on your public statements, I appreciate your commitment to maintain, and possibly grow, current taxpayer support for the NIH and your concerns over proposed budget cuts in the President’s Budget for the CDC.
I want to bring to your attention the funding levels and line items for the CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD). The President’s budget proposal reduces funding for the NCBDDD from $138 million to $100 million and proposes eliminating the line items for all programs.
This is the Center that funds the work at the CDC for Fragile X, in addition to disorders and diseases such as Autism, Tourette’s, spina bifida and muscular dystrophy to name a few. As an example of the CDC’s funding for Fragile X, they continue to fund an ongoing program for Fragile X called FORWARD, which collects more detailed information from families and clinicians on how individuals with FXS develop as they age. This helps to improve care and services to individuals and families affected by FXS, and this work would not be done without the CDC’s funding.
I am writing to request that, as you write the Fiscal Year 2018 Labor-HHS Appropriations bill, you maintain NIH and CDC funding levels and, within the NCBDDD, you provide Congressional direction for the spending levels for the various disorder and disease programs as Congress has historically done. Please provide at least $2 million for Fragile X, which is equal to last year’s level.
Thank you for your time. I look forward to your response.