Dear Friends,
Please hear me out! Those of us responsible for fundraising efforts at ASI are dismayingly aware of both the number and the strength of the pleas from worthy causes that we all receive these days. Personally, as a representative of a charitable organization, it makes me uncomfortable thinking of a fund drive in terms of competition. But that IS the reality. While contemplating writing this letter, I thought about what I would want to know in order to make an informed decision before apportioning my charitable giving.
Alström Syndrome, an inherited genetic disorder, is a particularly vicious “orphan disease” affecting children of all ethnicities throughout the world. All will go blind and partially deaf. Most will battle diabetes. Most will struggle against congestive heart failure, liver and kidney disease, respiratory, and urological problems. We all carry this gene that “malfunctions” in our Alström children. Understanding how it functions and solving the riddle of Alström Syndrome could well help all those who suffer from many of these same health issues!
The mission of ASI is: To provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alström Syndrome. To that end, we maintain three very proactive programs: Research, Education, and Family Support. These programs are administered by a volunteer Board of Directors and a very engaged Scientific Advisory Board. Not a single day passes without attention being paid to these programs and to the projects under development within them. A simple look through our web site will reassure you that we are clearly focused on the mission and that your contribution will be used exclusively to further these dynamic, productive, and essential efforts. If you have given in previous years, you can readily see the difference that you have already made in battling what one mother characterized as “this monster that lives within my child.”
Our greatest concern at present, in addition to maintaining our programs, is securing support for the 6th International Family Conference, Health Clinic, and Scientific Symposium that ASI will host in Helen, Georgia in June of 2010, a good deal less than a year away. Three hundred and fifty people are expected to attend. Many families have been denied medical care; many families have yet to meet another child with Alström Syndrome; few have been granted a comprehensive view of the health, educational, and social issues that confront an Alström family; physicians and researchers need to learn, consult, and network. These are the central issues that will be addressed at the conference with your help!
My personal passion and that of the hundreds of wonderful people with whom I work is to help these fantastic kids and to ultimately rid the world of this devastating disorder. While recognizing the importance, applauding, and, indeed, supporting any number of other causes, few, if any, among them can truly compete with the immediacy and the urgency of a hug from an Alström child or the plea in a parent’s eyes. Please!
Sincerely,
Robert P. Marshall
Executive Director
