NFXF Advocacy Day 2015
ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and NIH awards $35 million to Centers for Collaborative Research in Fragile X program.

ABLE Act

The ABLE Actafordable care act set the world on fire in Congress and in the mainstream media before the congressional summer recess. There are now 380 co-sponsors in the House (out of 435 Representatives) and in the Senate 74 of 100 Senators have co-sponsored. That’s really quite remarkable and in large part due to grassroots advocacy. So, a big tip of the hat to you all. For a list of co-sponsors in each chamber, follow these links:

When Congress returned from its summer recess there were a few pressing issues that bubbled up to the top of their agenda and now they’ve adjourned again until after the election in November. But we’re still cautiously optimistic that ABLE will come up for a vote after the election in the lame duck session of the current Congress.

As a result of pressure to reduce the cost of implementing ABLE, the bill that is brought up for a vote may look somewhat different than the last version you’ve seen. But, those at the negotiations table for us are working hard to preserve as many of the core components of the bill as possible. Since co-sponsorship should equate to a yes vote, then if all co-sponsors vote yes, the ABLE Act will become the law of the land.

There’s still a lot of moving pieces so please stay tuned. If there’s more we think you can do down the stretch, we’ll be in touch.

Appropriations

As it looks to be another budget-less year with the government continuing to run on a combination of continuing resolutions and/or omnibus budget bills, our funded programs at NIH and CDC are likely to continue with little change. However, while the NIH and CDC overall budgets have been stagnant and have not kept pace with inflation, the Peer Reviewed Medical Research Program (PRMRP) at the DOD will be funded at $200 million in 2014 (from $50 million the prior year). While new medical conditions have been added to the list of funded conditions, we are hopeful that the increase in total funds available will translate into increased funding for Fragile X projects.

Additionally, the PRMRP has invited the NFXF to nominate additional civilian grant reviewers to serve with CSN Leader Andy Selinger and Eugene Hickey, the current FX peer reviewers at the PRMRP. This is a very exciting sign that Fragile X is now a well-established condition in the PRMRP.

Keeping All Students Safe Act (KASS)

Seclusion and restraint legislation is something else NFXF Advocates have been working on for many years. Bills are pending in the House and Senate again in the current Congress but are not likely to come up for a vote before the expiration of the 113th Congress.

In the House there are 66 co-sponsors. However, Representative John Klein (MN), the Chair of the House Education and Workforce Committee (which has jurisdiction over this bill) has thus far refused to allow any debate on KASS. Coincidently, Representative Klein has recently been prominent in the news, prompted by his selection by HBO’s Bill Maher as the “winner” of Maher’s Flip a District contest. The “flip” refers to flipping Klein’s district from (R) to (D).

While we, of course, take no position on such things, it is an interesting coincidence that gives advocates of seclusion and restraint legislation one more race to keep an eye on come election night. As with the ABLE Act before it, the goal remains to secure as many co-sponsors as we can in the current Congress. Through this process, we stand the best chance of picking up where we left off in the next Congress and moving forward from there.

NIH award $35 Million for Center for Collaborative Research

NIH_Master_Logo_Vertical_2ColorThe recent $35 million NIH award to the Centers for Collaborative Research in Fragile X program should come as no surprise to experienced NFXF advocates. The FX Centers program dates back to the Children’s Health Act of 2000, which many NFXF Advocates helped pass.

NFXF Advocates were also instrumental in urging Congress to appropriate the money to fund these Centers in 2003. The NIH funded FX Centers have produced advancements that lead us to the exciting period in Fragile X research. Award recipient team members include regular presenters at NFXF International Fragile X Conferences, past or current NFXF SCAC members, NFXF FXCRC clinics practitioners, and NFXF research award recipients. This latest grant is the product of advocates returning to Congress year after year on NFXF Advocacy Day to ask their members to sign the appropriations letter.

The work of NFXF Advocates makes all the difference in the world. Congratulations to all of the FX advocates who made this possible.

Add your voice to our ever-growing chorus and join us in Washington D.C. on March 3-4, 2015 for National Fragile X Foundation Advocacy Day.