NAF Seeks Support of a Resolution for National Ataxia Awareness Day

Author: Lori Shogren, Community Program and Services Director

NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day happened on September 25, 2019. We are so grateful for all the support in planning the day and will cherish the relationships that were built as a result.

The Hill Day was a real honor to be a part of! This was my first trip to Capitol Hill. I found it to be an exciting and overwhelming place. The history, detailed symbolism, and abundant illustrations of power and influence were everywhere. There are truly amazing works of art and architecture in the Capitol and Senate buildings that I visited.

What was United Against Ataxia Hill Day?

The Hill Day was an influential platform to share powerful personal stories with lawmakers to better educate them about Ataxia and important legislative issues impacting our community. We asked for their support of our Resolution to declare September 25th as National Ataxia Awareness Day. Thank you to all the advocates who bravely participated and passionately shared their stories about how Ataxia impacts their lives! Those stories are what made this event so successful. Check out photos from our meetings below.

United Against Ataxia Hill Day Recap

We had a busy day on the Hill – 13 advocates met with 14 U.S. Senator Offices and dropped off information at an additional 13 Senator Offices! We worked to gain support for a National Ataxia Awareness Day Senate Resolution, NIH and FDA Funding, Newborn Screening Saves Lives Act Reauthorization, and the Rare Disease Congressional Caucus

 

Senators We Met With:

  • ID – Senator James Risch’s Office with Scott Reber, Healthcare Legislative Aide
  • MA – Senator Elizabeth Warren’s Office with Laura Aguilar, Legislative Correspondent
  • MA – Senator Edward Markey’s Office with Brianna Battle, Health Team Legislative Correspondent
  • MD – Senator Chris Van Hollen’s Office with Alyssa Christina Ramsay, Legislative Correspondent
  • MD – Senator Ben Cardin’s Office with Legislative Correspondent, Jonathan Heppen
  • MN – Senator Tina Smith and Legislative Aide, Erin Kurvers 
  • MN – Senator Amy Klobuchar and  Staffers, Tommy, Dillon, and Elyssa Malin, Legislative Aide
  • MO – Roy Blunt’s Office with Nick Seelinger, Legislative Aide
  • NJ – Senator Robert Menendez’s Office with Diane Adamson, Health Counsel
  • NJ – Senator Cory Booker’s Office with Kimberly Miller-Tolbert, Health Legislative Aide
  • NY – Senator Charles Schumer’s Office with Garrett Devenney, Health Legislative Aide
  • NY – Senator Kirsten Gillibrand’s Office with Health Legislative Aides, Gilbert Ruiz and Jasmin Palomares
  • VA – Senator Mark R. Warner’s Office with Hayley Brower, Health Legislative Aide
  • VA – Senator Tim Kaine’s Office with Mayura Iyer, Health Legislative Aide

Supporting Rare Disease Initiatives

All the Senators that we met with were very supportive of robust NIH and FDA funding and the Newborn Screening Saves Lives Act Reauthorization. It is very important that Newborn Screening Saves Live Act is reauthorized soon to maintain funding. Please contact your Senators and Representatives about making this bill a priority to vote on.

As a result of our meetings, Senators Tina Smith and Edward Markey joined the Rare Disease Congressional Caucus. The Caucus provides a platform for discussing pressing policy issues and gives rare disease patients a voice on Capitol Hill. The Caucus hosts quarterly Caucus briefings that address issues impacting the Food and Drug Administration and the National Institutes of Health and legislation affecting the rare disease community. Encourage your Senators and Representatives to join the Rare Disease Congressional Caucus if they are not already a member.  

What Next?

You can help gain support for the National Ataxia Awareness Day Senate Resolution by contacting your state Senators to co-sponsor this resolution. More information about the Senate Resolution can be found on the Resolution One-Pager. If everyone contacts their Senators to support this Resolution, it is more likely to get passed! If you have a personal connection with any Republican Senators, please contact me about inviting them to be a lead co-sponsor of this resolution. Email me at lori@ataxi.org or call me at 952-553-0020.

Become an Ataxia Advocate

Become a member of NAF and select advocacy as an interest to join our advocacy mailing list. For more information on NAF’s advocacy efforts you can also visit our advocacy page

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1 thought on “NAF Seeks Support of a Resolution for National Ataxia Awareness Day

  1. Good info to have. Before I was diagnosed I didn’t have a clue. I am now retired from my job, but worked from the onset in 2017 until August 21,2019. My faith in Jesus kept (keeps) me going.

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