For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. These take place in home districts so advocates don’t need to travel to DC and members of Congress hear from folks at home. We have a record number of advocates this year – 71 – and are the largest group participating!

In case you are an advocate who missed the email or are just curious what we are asking for, here is the email sent to advocates on 7/26/2019 to prepare for their meetings.

Thank you, again, for your patience waiting for the materials for the advocacy meetings in August. Partly I was waiting for Congress to take some actions Kelly Quaye and Rep. Joe Kennedybefore they recess – which they did – and partly we have been jammin’ with Awareness Month. Thank you to all of you who have shared, wore shirts, donated, etc. We are moving the needle.

First – if you don’t hear about any meetings being scheduled by tonight, please let me know. They are supposed to send out updated schedules this evening.

Second, I know I am writing to both experienced advocates and new advocates. If you are a veteran, thank you for coming back year after year. If you are new, thank you for joining our efforts. If, after reading this email you still have questions, click the button at the bottom of this email. I am gauging interest/need/availability for a conference call next week to answer any remaining questions.

Third, as you prepare for your meetings, please remember that there will likely be other participants there. Some may be Fragile X advocates, some may be advocating from other disease/disorder perspectives. Be prepared to spend no more than 5 minutes presenting about Fragile X and our asks.

Fourth, here is some helpful information:

  • State-specific fact sheets. Until we have a fancy webpage to distribute these, please go here and download your state’s sheet. If a state is large enough to have regions or different chapters, look for your specific one. The stats are the same, it is just the logo and contact email that varies.
  • Leave behind. You will also leave this sheet with the member of Congress/staff. It summarizes our asks. Download it here.
  • Background. This sheet is for your use to help you understand the asks and the strategy. Download it here.
  • Senate DOD Research Letter. If you have a meeting with your Senators, use this letter (here) to see if they supported our ask to be included in the DOD medical research program this year. If you are meeting with a member of the Senate Defense Appropriations Subcommittee (see the background sheet), share this letter with them.
  • Caucus listCheck this list to see if your House member is currently a member of the Fragile X Caucus. If they are, thank them. If they aren’t, ask them to join. There is no cost to their office budget to join, unlike some caucuses, if they ask.
  • Family sheet. We have found having a sheet of photos, etc. telling your Fragile X story, sharing about your child, grandchild, etc. helps personalize the ask and underscore this is about helping real people. If you don’t have one already, here is an example. If you don’t have time to pull this together, don’t worry. It isn’t a requirement, it is more like the icing flower on the cake rather than the cake.

Fifth, grab a photo at your meeting and fill out the after-meeting report following the meeting so we can track responses from the offices.

Finally, if you are nervous and anxious, you are not alone. If, you are not alone in your anxiety, and, second, you are not alone in your support. I am here to answer any questions and help you along. Just remember – they are people too, tell your story like they were someone you just met or are a new teacher or clinician, and be nice. Treat them like you would want to be treated.