Making a difference!

Dear Friends,

Quite simply, Alström Syndrome International cannot survive without the contributions of individual donors! If you know someone who is blind, you know something about Alström Syndrome. If you know someone with dilated cardiomyopathy and congestive heart failure, you know something about Alström Syndrome. If you know someone with diabetes, you know something about Alström Syndrome. If you know someone who battles kidney or liver or lung failure, you know something about Alström Syndrome. However, if you know some ONE who has all of these medical issues, then you know someone WITH Alström Syndrome. Imagine - and take just a moment to think about the implications for these children and their families.

I want to share several pictures with you. First, let me tell you that prior to 1998 when ASI researched the issue, no one had documented that dilated cardiomyopathy was a cardinal feature of the syndrome. Today, while we strive to optimize treatment and to find a cure, steps can be taken to prolong and improve the lives of our children even as we face the humbling and deeply distressing losses that we must endure. Elin died at age 15; Veata received a heart transplant at age 3 months and is doing well; last week, Kolby, age 14, was discharged with a heart in her purse, a mechanical device that circulates her blood, and will rejoin her high school class.

Over the years, ASI has told you about its three programs (research, education, and family support). It has told you about the devastating array of medical issues that our kids endure. We have taught you Genetics 101 so you know that we ALL carry the ALMS1 gene. You have learned that AS is found throughout the world in all ethnicities. You know that in pursuing the mission above, we might well help those in the general population who suffer from just one aspect of the syndrome. You have heard from some of our individual kids and know them to be bright, engaging, and heartbreakingly normal. You have learned that rare disorders are called orphan diseases because so few care enough to help. Do you? Will you?

Need I say more? Please give! 

Sincerely,

Robert P. Marshall
Executive Director

  

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