2020 Ataxia Hill Day

NAF and FARA will hold our second Hill Day on Thursday, September 10, 2020! This event will raise awareness about Ataxia and support legislation that directly impacts our communities.

What Happens at Hill Day?

Representatives from NAF and FARA have scheduled meetings with US Senators to discuss issues important to the Ataxia community. We’ll also seek support for our Resolution to declare September 25th as National Ataxia Awareness Day.

Let's Flood the Hill!

We want your help! We are asking members of the Ataxia community to flood the hill with correspondences on September 10th. Plan to call or email your representatives and post on social media! Join our webinar to learn what to do. 


Hill Day Advocacy Webinar

Wednesday, September 2, 2020
7pm EDT

Members from NAF and FARA will cover the issues we plan to discuss with Senators and review how you can make your voice heard.  After you register for the webinar, please do not share your access information with other people.

 

About the Issues

Below is a quick highlight of the issues that we are currently following. See a topic of interest? Click the title for more information.

National Ataxia Awareness Day Resolution

September 25 is National Ataxia Awareness Day –a coordinated effort from individuals and Ataxia organizations around the world to help shed light on and fight to end this rare disease. Designating September 25 as National Ataxia Awareness Day through a Simple Resolution will bring awareness needed to improve the lives of the persons and families affected by Ataxia. This resolution will help break down the isolation barriers faced by those with Ataxia because the disease is rare and unknown to most. This resolution can help accelerate development and access to effective treatments for this disease.

  • Republican Co-Sponsor is Needed! If you have a Republican Senator in your state, please contact them about Co-Sponsoring this Resolution. Please contact NAF if you have any relationships with any Republican Senators or if you receive any interest from a Republican Senator about being a Co-Sponsor of this Resolution.
  • If you have Democratic Senator in your state please invite them to support this Resolution once it is introduced to the Senate.

Rare Disease Congressional Caucus

The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address roadblocks to the development of and access to crucial treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Working together, we can find solutions that turn hope into therapies and cures. Find Out if your Representatives are members of the Rare Disease Caucus. Thank your Representatives that are members and Invite those that are not to join.

Community Home Health and Telehealth Policies

In the early weeks and months of the COVID-19 public health emergency, Congress and the Administration took important steps to ensure patients have access to essential care while the nation grappled with controlling the spread of the virus. Specific time-limited regulatory flexibilities have removed significant barriers to care and improved access for the 30 million Americans living with a rare disease or condition including Ataxia. However, these flexibilities are at risk of going away when the public health emergency ends. We urge policymakers to recognize how these flexibilities have benefited members of the rare disease community and consider which policies should be kept in place after the public health emergency ends.

  • Your experiences with Telehealth and Home Health Services are wanted! Submit your stories to lori@ataxia.org. We will be sharing your experiences with Senators on September 10.

Creating Hope Reauthorization Act

This bill will permanently authorize the Pediatric Priority Review Voucher (PRV) program. It will allow further opportunity to spur innovation in rare and neglected diseases that disproportionately impact children.

Find Your Local Representatives

Use the links below to find contact information for your representatives. 

Congressional Representatives

Senators

For more information contact Lori Shogren, Community Program and Services Director, at lori@ataxia.org.

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