United Against Ataxia

Author: Lori Shogren, Community Program and Services Director 

An IAAD Like No Other

September 25th is International Ataxia awareness Day (IAAD). Over the last 20 years IAAD has grown from a day to create awareness about Ataxia into a movement to fight Ataxia through awareness, advocacy, and fundraising. Today, thousands participate in IAAD through social media posts, local fundraising events, and advocacy activities. This year we have created multiple opportunities to get involved with the “United Against Ataxia” IAAD campaign. We need to continue to raise more awareness about Ataxia to break down the isolation barriers and misconceptions that are often associated with Ataxia because it is rare, complex, and largely unknown. Awareness also opens doors for more funding opportunities which leads to further development of effective treatments. Unite with us against Ataxia by participating in this year 4-week campaign to raise more awareness, grow our community, and further research efforts. 

More information about how you can get involved can be found on the IAAD webpage. Download the IAAD Kit and keep and eye out for notices that will distributed throughout the campaign. Share all the IAAD notices with your networks so we can create the largest outreach of awareness to date! 

United Against Ataxia Hill Day – September 25, 2019

This year NAF has partnered with FARA and the EveryLife Foundation for Rare Diseases to bring IAAD to Capitol Hill for the United Against Ataxia Hill Day on September 25. Advocates will be meeting with U.S. Senators to gain support for a National Ataxia Awareness Day Senate Resolution. You can help gain support for this resolution by contacting your state Senators to co-sponsor this resolution. Invite your senator to support the bill. Information about the Senate Resolution to share with your Senators can be found here: Download PDF. If everyone contacts their Senators to support this Resolution, it will get passed! 

Take Action Locally

You can also request IAAD proclamations from your mayors and governors. Proclamations requests can be found on many websites for Governors and Mayors. Instructions, and sample letter, and sample resolution can be found at this link: How To Get a Proclamation or Resolution for IAADCeremonies are often arranged for Proclamations that are issued. This is a great opportunity to meet with your Governor or Mayor and get a group photo. The proclamation and group photos are nice stories to share with your local media outlets and on your social media. Be sure to tag your Governor or Mayor and NAF in your social media posts. Use #IAAD19 for your social media posts to help International Ataxia Awareness Day trend on social media! Send in your photos and proclamations to NAF at naf@ataxia.orgLet’s obtain IAAD proclamations from every state! 

There are amazing individuals in the Ataxia community, and you are one of them! United, your stories and advocacy will create the energy in this movement that we need to further our mission and improve the lives of people affected by Ataxia. Thank you for uniting with us against Ataxia! 

 

Find Local Events 

IAAD Materials:

For more information or to tell us about your IAAD activities contact naf@ataxia.org 

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