Advocacy
News & Updates
June | 2019
Upcoming Events
See what's happening this month .
Tell Us About Your Efforts
Let us know about your advocacy activities! Contact Lori Shogren, Community Program and Services Director.
Phone: 763-553-0020
Rare Across America
A movement to share your rare disease story with your Senators and Representatives to make an impact.
National Ataxia Awareness Day - Pursuing a U.S. Senate Resolution
We're looking for volunteers at the local level to help seek out support for a Resolution to declare September 25th as National Ataxia Awareness Day. Contact us to be the leader of this initiative in your area.

Current Legislative Issues:
Support for H.R. 2507 - Newborn Screening Saves Lives Reauthorization Act
A bill that supports newborn screening programs is set to expire soon. H.R. 2507 supports initiatives for early detection of some rare conditions. Urge your local representatives to support the Newborn Screening Saves Lives Reauthorization Act to ensure continued services that could become crucial as an early detection system for Ataxia in the future.
Opposition to Proposal to Amend Section 101 of the Patent Act
NAF signed on to a letter opposing the recent proposal to amend Section 101 of the Patent Act. The changes would severely limit discovery of treatments in brain diseases, such as Ataxia, and would create barriers to patient access to genomic tests and DNA sequencing technology.
Find Your Local Representatives:
For more information on legislative issues and advocacy, visit: www.ataxia.org/advocacy

763-553-0020 | naf@ataxia.org