Thursday, July 21, 2011

Please Share Your Experience and Advocacy Stories with the Genetic Alliance

This week, 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. We will turn those experiences 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.

This 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:

There is such a wealth of knowledge by families that needs to be shared and we certainly hope that you will take a few minutes out of your busy day to either complete the survey or assist and encourage others to do the same. Advocacy has always been about getting the information needed and then turning it around so others can benefit too. Parents are tremendous experts and each parent that has ever struggled to access systems of care or education understands why providing information to someone else grabbling with the same issue is invaluable.

We hope you will consider participating so other families may benefit from your story!


veronica said...

I think people who are struggling with what they are going through need to hear other people's stories. they can feel some ease and know that they are not alone in their battle.

veronica said...

This is a great way for those who have been recently diagnosed to get some type of support in what they are going through. they can read someone's story and know that they are not alone.

Elisa said...

I believe people sharing their stories is a great idea. Most family memebers who receive a diagnose may feel that they are alone and by doing such a program it may give them the hope that they are not. These stories can do a lot of good as far as support and learning different techniques that may help a family adjust to such a condition.

Nicole said...

I think that this is an excellent idea. When a family member is diagnosed with a disability, it is traumatic to all those who love and care about them. It helps to have someone there that you can talk to who knows what you are going through. It heklps them feel less alone to know that there is someone else out there who feels what they feel.

Nicole said...

I think that this is a great idea. When a family member gets diagnosed they feel freightened. They often assume the worst and they feel like nobody else could ever feel what they are feeling at that moment. I think that this program lets people know that they are not alone and that there are people who have been through the same things as they have. It can provide for hope and comfort.