The Genetic Alliance, in partnership with Family Voices and The Arc, launched an online questionnaire that allows experienced family advocates to share their advocacy journey, including how they developed certain skills and created the opportunities to influence systems. These experiences will be turned into stories that will inspire and encourage others to take action to improve lives and enrich communities. By collecting these stories into a publication and identifying the common themes, readers, who will be family members or individuals recently diagnosed with a genetic condition, chronic disease, disability and/or special health need, will begin to understand how to influence their own path in advocacy.
The online questionnaire will close on Friday, August 19. Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can be found on the survey landing page: http://bit.ly/qii6iK.
Please also send this survey to other chapters in your network and any families you feel would have a valuable story or experience to share. If you have any questions in follow up to this email, please don't hesitate to send them to Alyson Krokosky at firstname.lastname@example.org.