Foundation Blog

At Last Posted On (May 9, 2010 10:01 pm)

Two weeks ago tomorrow we returned to Slidell, Louisiana. This time for good! It will take some time to get the new house settled but we all feel, and have felt from the night that we got here that we did not move into a house. We are finally home. The next few months will be active ones for the foundation. The new gene therapy method will most likely begin to be tested within the next several months. We are extremely optimistic that this will lead to better things for all future ALD families. My primary goal beyond the success of Dr. Aubourg's work is the funding of a law that means more to future ALD boys than anything you might imagine. The Newborn Screening Saves Lives Act was signed by the president in April 2008. This law requires each state to test for twenty nine genetically inherited disorders. Because of the work of Ann Moser at The Kennedy Krieger Institute, ALD is poised to become the thirtieth by the end of the year. Gone will be the days in the U.S. where a child is evaluated and his mother and father are misinformed about his prognosis. Understanding that ALD may be a factor in their son's life will enable mother's and father's to take decisive action from day one so that they are prepared for what is to come. This has been my primary goal since the beginning. Making sure that families have a clear picture drawn as to the negative effects of ALD before they are caught in a myriad of pain on the part of their child. It is my goal to work with members of the U.S. Senate Appropriations Committee to ensure that the funding that needs to come forth for this law is made available. The future of boys and girls far and wide depends on it. Never before in the ten years since the foundation was incorporated have I made an appeal online for funding. Asking a person face to face to play a role in the eradication of ALD has always been easier for me as I consider myself a communicator and enjoy time spent with people. The economic crisis has made things more difficult in terms of fund raising for us, as well as many other non-profits. While I am not asking anyone to dig deep and send massive amounts, every little bit counts. If anyone reading this might consider supporting us I would appreciate it. The road we have traveled thus far has been, at times, challenging beyond belief. I know in my heart today that the future may well include families no longer facing what so many have and that pleases me. Although there is no way to predict what the future holds there are certain guarantees. It must be understood by all that my dedication to this necessary work will never waver. That my intent to see boys spared the cruel fate of ALD will never change. Until the day comes where we can adequately ensure that each and every boy the world over does not have to go through the agony of this disease, I will work ad hard as I have to so that this can take place. Thanks for your time. Best, David Cry   Comments(0)     Email to Friend

Going Home Posted On (Mar 10, 2010 8:45 am)

Dear Friends, My family and I have decided to return to Louisiana. After the birth of Brennan nearly two years ago, the idea of greater support and spending more time with family has led us to this decision. Thankfully our house sold yesterday and we are now preparing for the move. After we get "home" I will update the blog to let everyone know what is next in the world of ALD. Thanks to all for your continued support. All My Best, David Comments(0)     Email to Friend

Update Posted On (Jun 14, 2009 11:14 am)

Dear Friends, As many can imagine, raising a child and working simultaneously is never an easy thing. Despite that, Brennan is with me all day, Monday through Friday, inspiring me to forge ahead in the fight against ALD. Several months back the foundation became involved with Paris based ALD researcher, Patrick Aubourg. Patrick's expertise involving ALD is quite impressive. I hoped to find, at the very least, a sounding board of sorts to ensure that we were on the proper path. After a few weeks of communication, Patrick sent me a wish list of sorts. One of the most critical points on his list was working with Dr. Rudolph Jaenisch at M.I.T. Dr. Jaenisch had created disease specific stem cell lines for Parkinson's and Sickle Cell Anemia. Dr. Aubourg reasoned that the creation of a line for ALD would answer questions that had plagued science for decades. The upside of this was that Dr. Jaenisch made the cell lines using skin cells from affected patients. Quite an easy thing to acquire. After learning of Patrick's greatest need, I reached out to Jaenisch. Despite the fact that we did not know one another, he responded to me very quickly and showed interest right from the start. What has occurred is inspiring. The first ever ALD stem cell line is very nearly completed. It will allow the disease to be viewed in a way that it never has before. I am certain that many inroads will be traveled as a result of these findings. I am very happy to report this to all of you. As soon as it is a go, I will update the blog to let you know. All My Best, David Comments(0)     Email to Friend