Did you know that it takes an average of 6 years to receive a diagnosis of dysautonomia, and two years to get in to see a specialist? If this wasn't frustrating enough, you then find out that there are no current treatments or cure, only the management of symptoms?
October is Dysautonomia Awareness Month, and I need your help to ensure our brave superheroes fighting daily with this syndrome know we are making headway! TEAMDAF with your help, will not only be able to continue to educate the medical community about the signs and symptoms of dysautonomia, but will also continue to FUND groundbreaking research that WILL bring this elusive syndrome out into the limelight! With your help, we can fund research that will lead to actual treatments, and ultimately a CURE!
Last year from my dark room, light came in, and friends and family stood up and formed Dysautonomia Advocacy Foundation. In just one year, DAF has grown to an outstanding number of 22,000 International Team Members, and we are still growing!
Below are some of TEAMDAF's Projects;
We have created a relationship with Dr. Blair Grubb of the University of Toledo. He is at an exciting point in his research identifying important antibodies that could lead to a biochemically based diagnosis. Currently, there is no blood test that identifies this syndrome. Because of this, funding is lacking. HOWEVER, Dr Grubb and his team have found one, and they need our HELP to get to the next level! Our Team Members and millions of others, yes and myself, fervently need this research to continue. Having the validation of a diagnosis, while bad, gives the family and patient peace of mind that what they are going through is a medical diagnosis with hope for treatment!
DAF is proud to stand with other rare disease organizations for legislation aimed towards helping patients with the costs of medications deemed "off label" currently being denied by insurance companies. With the mounting medical bills, this only adds to the finical strain many families dealing with dysautonimia face.
If this wasn't enough to keep us busy, our volunteer board, friends, and interns are expanding our social media, educational, and research outreach programs!
I am so proud of the work we are doing to advocate for the lives of those fighting daily with this syndrome! To read more about the details of our projects, please click on this link http://www.fundcourage.org
To learn more about dysautonomia please visit http://www.dysautonomiafoundation.org http://www.facebook.com/dysautonomiafoundation
If you read all of this, you rock! Thank you for taking the time to learn about why I have been struggling. Most important why your donation would mean the world to me and millions suffering in silence.