2020 Ataxia Hill Day

NAF and FARA held our second Hill Day on Thursday, September 10, 2020! The event raised awareness about Ataxia and supported legislation that directly impacts our communities.

Ataxia Hill Day 2020 Was a Success

Thank you to all who helped us Flood the Hill for #AtaxiaHillDay. Twenty Senate meetings were held with 47 advocates calling in from all over the country! Meetings included Ataxia patients, physician/researchers, industry partners and members of both NAF and FARA.

Eight letters supporting the National Ataxia Awareness Day resolution were also submitted by key stakeholders at institutions treating and researching Ataxia. As a result of our advocacy efforts we have secured the co-sponsors needed to obtain the Senate Resolution declaring September 25th as National Ataxia Awareness Day! This is a monumental and historic accomplishment in bringing greater awareness of Ataxia nationally.

We would also like to thank all of the following Senators and/or their staff who took time out of their day to meet with us: 

  • Elizabeth Warren
  • Lamar Alexander
  • Mitt Romney
  • Roy Blunt
  • Mike Lee
  • Josh Hawley
  • Rob Portman
  • Bill Cassidy
  • Pat Toomey
  • John Cornyn
  • Richard Burr
  • Cory Gardner
  • Thom Tillis
  • Roger Wicker
  • Cindy Hyde-Smith
  • Rick Scott
  • Marco Rubio
  • Rob Portman
  • Joni Ernst
  • Kelly Loeffler

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.


Hill Day Advocacy Webinar

Members from NAF and FARA cover the issues we plan to discuss with Senators and review how you can make your voice heard.  

 

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.

Support Robust Funding for NIH and FDA

While Congress has provided the NIH and FDA with crucial funding increases in recent years, the NIH is still forced to turn away 80% of the promising research grant proposals it receives, and FDA resources are stretched dangerously thin as it works on multiple fronts to speed medical progress and protect the public health. There is no doubt that insufficient funding slows desperately needed progress against rare diseases.

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

Twitter Post Examples

Find the Twitter handle of your local representative – then use the examples below to encourage them to support our cause.

Examples:

Unite with us @MittRomney! Co-Sponsor the National Ataxia Awareness Day Resolution! #AtaxiaHillDay #CureFA

Increased funding for NIH and FDA are vital to Ataxia drug development. Thank you for supporting these important agencies @SenatorSmith! #AtaxiaHillDay #CureFA

Telemedicine gives rare patients access to doctors while protecting their health and resources. @SenWarren please pass legislation that will ensure coverage for this vital medical service. #AtaxiaHillDay #CureFA

Help SPARK innovation for pediatric rare diseases @SenateGOP & @SenateDems! Support Creating Hope Reauthorization Act! #AtaxiaHillDay #CureFA

Curing rare disease requires raising awareness of this public health crisis. 1 out of 10 Americans suffer without any approved treatments. Show your constituents that rare disease is a priority for you @SenGillibrand and join the Rare Disease Caucus. #AtaxiaHillDay #CureFA

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

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