In preparation for the National Fragile X Foundation’s Advocacy Day 2017, we are publishing initial details on our “asks” for this year’s meetings. It is our goal to provide each advocate ample time to prepare, in an effort to ease anxiety related to the day. Our asks, as always, are bipartisan and reflect the best interests of our community. Personal politics and any animosity between or among advocates have no place at Advocacy Day so we hope each of you will come to Washington, DC prepared to share your story and fight for the needs of all those living with Fragile X.
A Pledge of Commitment
The most important reason for your visit is to put a face on Fragile X. We know, all too well, that most people we encounter in our daily lives are not familiar with FX. Your elected officials, together with the President, decide how much money will be allocated to medical research and programming at the National Institutes of Health (NIH), the Centers for Disease Control (CDC) and the Department of Defense (DoD). They also have a role in helping the professionals at these agencies set directions, establish priorities and evaluate progress made.
Ask yourself, how these powerful men and women in Congress can advocate for FX if they’ve never heard of it or don’t understand how it impacts their constituents – that’s you! Their job is to represent and serve their constituents to the best of their ability. To do this they must know who you are and what you need and expect your federal government to do for you. It is OUR government. WE fund its operation and IT provides support for the lives that WE collectively decide it should.
So “Ask” #1 is that they meet with you, listen to you, learn from you, care about you and, within the limits and rules we all must play by, help you. Now this doesn’t just happen because we want it to or because we ask for it. This kind of “ask” is premised upon a relationship between you and someone who has the power and the ability to help you. Your job on NFXF Advocacy Day is to begin building the kind of rich relationship that will make them WANT to. Some of you will be meeting with your MOC and/or staff for the first time and others will be reconnecting for a second, third or fourth time. Wherever you are along this journey your job is the same…to advance that relationship. Be ready to close your meetings with these types of questions.
- Can I count on you to explain FX to your boss and tell them how important their help is to me and my family?
- Did you learn something today about FX and will you think of us when you carry out the difficult task of allocating and prioritizing resources for 2018?
- Can I visit with you again in your in-state office? I’d like to bring in my family member who’s living with FX and other impacted families from our state who couldn’t make this trip. Who should I speak with about setting that up?
- Can I stay in touch with you throughout the year? Maybe you or your boss can attend one of our local parent gatherings back home. Who should I talk to about setting up something like that?
Sign a Letter to the Appropriations Committee
Ask your Member of Congress to sign our letter to the Appropriations Committee, which asks for continued funding of Fragile X research and programming by the NIH, CDC and DoD in the next budget year. It was drafted with our champions: House Reps. Harper and Engle, Senators Stabenow and Isakson. A copy of the letter will be provided in the training materials and leave-behind folders you deliver during your meetings.
Consider these asks:
- Can I count on you (your boss) to sign on to the appropriations letter that will be circulated by Reps. Harper and Engle and Senators Stabenow and Isakson?
- (If anything less than a full commitment) When can I follow up with you to find out if you’re able to sign on?
- (If they are on one of the Appropriations Committees) I understand that as a member of Appropriations you can’t sign a letter to yourself, but as our request moves through the appropriations process, will you ask your colleagues on the committee for their support?
- (If a Representative) Our champions Reps. Harper and Engle co-chair the Fragile X Caucus. As a show of your support for those living with FX in our district and state, will you join the FX Caucus?
Co-Sponsorship of Pending Bills
Ask your Member of Congress to co-sponsor bills. At this writing, these are bills from the last session of Congress which have expired. We are expecting them to be reintroduced to the 115th Session of Congress. These are the bills we are expecting and will provide an update during training on 2/28/17.
- ABLE to Work Act: The bill will allow ABLE account holders who work and earn income to save more than the current limit of $14,000 per year.
- ABLE Financial Planning Act: The bill will allow ABLE account holders to roll over college 529 accounts into ABLE accounts to help families who set up 529 college accounts before receiving a child’s diagnosis and now cannot use their 529 funds for their original purpose.
- ABLE Age Adjustment Act: The bill will allow individuals whose disability onset was before age 46 to open ABLE accounts (currently only those with an age of onset of 26 or before can open ABLE account). This will enable more individuals who become disabled later in life to take advantage of the benefits of ABLE accounts.