One of the challenges for individuals with FA and for FARA is that FA is a rare disease. The general public is usually unfamiliar with it and does not know how to help.
There are a lot of ways to increase awareness within your immediate network and beyond.
In honor of Friedreich's Ataxia Awareness Day, the Friedreich's Ataxia Research Alliance (FARA US) is joining the Friedreich's Ataxia Research Association's (fara-australia) LEND US SOME MUSCLE (LUSM) Campaign. Join us . . . let's lend some muscle together to raise awareness and funds to support ground breaking research and #CUREFA.
Spread the word about FARA through your online social networks and friends. By listing FARA as a charity you champion in an online application, you help to raise awareness and gain new supporters.
A few common networks used today are:
Facebook - Invite your friends to like FARA's official Facebook page
Twitter - Follow FARA on twitter
LinkedIn - Join FARA's LinkedIn group
Youtube - Look for video postings from FARA events
A letter writing campaign can serve several purposes. It gives you an opportunity to raise awareness about FA and explain to people how they can help. The most successful campaigns start with sending letters to your family, friends, colleagues, business associates, etc. Often, people want to help but they do not know how and are afraid to ask. Letter writing campaigns can bridge this gap. Click here for some template letters and suggestions to help you get started: Letter Writing Campaign template.
You can raise awareness about the nature of FA and the work FARA is doing to raise funds for research by speaking about it in your community (school, church, library, place of employment). Such speaking engagements can also create opportunities to grow the FA community’s network of support. Much of FARA’s success and speed of research is credited to collaboration and networking in the scientific and patient communities as well as with related disease groups. If you’d like to speak with someone in the FARA office about how best to prepare for a speaking engagement, please contact info@cureFA.org.
Media outlets such as newspapers, magazines, television, and radio allow us to reach an even broader audience. If you have a personal or professional connection to such outlets, we welcome the opportunity to work with you in communicating information about FA and FARA to the general public. Contact info@cureFA.org.