Foundation Blog

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A Dollar's Worth of Hope Posted On (Jul 16, 2011 11:51 pm)

The Adrenoleukodystrophy Foundation, a 501 C (3) non-profit corporation is dedicating this Facebook Fan Page to a unique and worthy effort. In light of recent research related strides towards the treatment of ALD, The Foundation has determined that it now makes sense to focus our energies on the appropriation of The Newborn Screening Saves Lives Act so that more children with ALD, who have yet to be born, may be identified on their day of birth.         Passed and signed in 2007, this law amends the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated follow up care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. The only action this law has taken to date has been the further education of parents whose children are identified as having an illness detected through newborn screening. Thus far, each state still maintains the right to screen for whatever it chooses. This law put forth guidance for the core group of diseases that each state should test for and lays the groundwork for all states to test for the same number of diseases. In that the screening for ALD is poised to become available soon, we have decided to take it upon ourselves to work with members of Congress to see the money needed to make this a reality, forty-one million dollars, be made available sooner rather than later. Identification of an inherited, genetically determined disease on the day of birth may well mean the difference between life and death. For those disorders that can be screened for that have no available treatment, it is our belief that further, consistent identification of these diseases will spurn progress in the treatment of all disorders that can and should be screened for.   A Dollars Worth of Hope allows each Facebook fan to invest in this most ambitious cause. In that all non-profit organizations have requirements for providing receipts for large donations, by pledging one dollar, and effectively waiving the requirement from us for federal tax purposes, you are investing in the long term health of future generations of children.   This fan page will be updated regularly with amounts raised, as well as the progress of our actions on Capitol Hill. We will consistently provide information related to our efforts and be assured that your pledge will go a long way towards making a difference in the lives of many families.   As more children are identified each year as having ALD, I shudder to think of what it might have meant to their mothers and fathers had they been given the opportunity to identify them before the onset of symptoms. ALD is a parent’s worst nightmare disease. The havoc it wreaks on families may well be the most ambitious circumstance that any family has ever dealt with. Education regarding the possibility that this phenotype may be present in their child’s life may well mean that interventional therapies may be applied in a timely enough fashion to prevent major damage to be done.   Should anyone have any questions regarding this effort, please feel free to contact the foundation at your convenience. For your information, our web address is http://www.aldfoundation.org/ and the e-mail address to submit queries to is info@aldfoundation.org   Together, we can make a difference in the fight towards better patient education and advocacy! Please send a dollar today. Together we can and will make a difference! Donations may be mailed to: The Adrenoleukodystophy Foundation 241 Camden Street Slidell, LA 70461   Sincerely,   David A. Cry Chief Executive Officer The Adrenoleukodystrophy Foundation Comments(0)     Email to Friend

Our Son Logan Posted On (Jul 16, 2011 11:50 pm)

May 1st of 2010 signified a new beginning of sorts for my family and me. We moved home to Slidell, Louisiana. Really, the only place I have ever really called my true home. We left in March of 2006 after Hurricane Katrina. When a storm of this magnitude strikes just sixty two days after marrying the girl of your dreams, a girl by the way who has never been through a hurricane, life has a funny way of leading you to different horizons. I was excited. We found a magnificent home in a wonderful neighborhood and despite the need for new floors and a coat of paint here or there I was content. This was primarily due to the fact that our kids, Logan and Brennan would have the same sorts of opportunities during childhood that had been afforded to me. I grew up catching fish and hunting, making friends with individuals when I was very young that I still hold dear today. Slidell is by far not the perfect place to live but it is home. If someone were to ask me why I lived here I don’t know that I could answer in any other way but to say that this place is more a part of me than most other things in my life. It just fits and that is always a good thing. Just a few days after we got settled in, I received what I considered to be a disturbing call from Logan’s principal. Logan is not my natural child. He had just turned seven when Jaymee I wed. The school indicated that Logan was showing abhorrent in school. He had refused to complete an assignment in class and when asked to attend a lunch time detention to finish it, had failed to show up. Jaymee and I became concerned as behavior had never been anything of a problem in school for our son. I initially dismissed it, feeling as though the move that late in the school year was the cause. We decided to come home when we did to allow him the chance to meet kids before school was over for the year. Starting seventh grade in a totally new school without knowing a soul would be a difficult thing. We had no desire for him to be overwhelmed. Jaymee and I spent the next few days just observing him. We finally decided that what was best would be a psychological evaluation to determine what was at play. After a few appointments with a wonderful doctor, I went in to learn what she had determined. It was one of the more difficult appointments I have ever been required to attend. Nothing she explained about Logan sounded anything like him. Her observations were, in her opinion, spot on, but in no way sounded like the kid I had called my own for the previous five years. About a half hour through my instincts kicked in and I slowly put my head down and sighed. When the doctor asked what was wrong I simply told her that in all likelihood, we had come to see the wrong type of doctor. Jaymee and I met in 2003 through an e-mail. She contacted the foundation to learn more about ALD. It ran in her family and Logan was born genetically predisposed to develop the disease. For several years we were consistent with testing to see if his gene was active. On the advice of a physician, we breathed a heavy sigh of relief on his tenth birthday though. It was at that time, we were told, that the likelihood of pediatric development was significantly decreased. Just after he was born, Jaymee was in fact told that he would follow the same course as her father who died from adult ALD. I explained to her the first time we spoke that making that call was impossible. Predicting the phenotype of this family of diseases is something that science is still not capable of. It wasn’t in 2003, and still is not today. Because my instincts were crying out that afternoon is the psychologists office, as soon as I arrived home I told Jaymee that we needed to schedule another brain MRI. Three weeks later we learned that Logan was positive for ALD. Initially bewildered, the C.E.O. in me went to work immediately searching for a solution. Unfortunately, the score of Logan’s MRI was high. For those who are not aware, a brain MRI is scored on a nineteen point scale. One is normal, nineteen very bad. On his day of diagnosis, Logan registered a thirteen which frankly shocked me, as the only true symptom we saw were fleeting behavior problems. I first turned to a physician in Paris, Dr. Patrick Aubourg. Patrick explained quickly that the gene therapy method that he has developed that has arrested ALD in five boys would not be available to Logan. His score was too high and the fact that the clinical trial to determine the viability of this method will not be underway until fall of 2011 meant this was not an option. Next I turned to trusted bone marrow and gene therapy doctors. Just before making plans for Logan to be evaluated, Jaymee stopped me. The mother in her needed to understand full well the statistical accuracy of these procedures as it related to boys with as much damage as Logan. Shortly after learning that the risks by far outweighed the benefits, for her, the answer was clear. We would be traversing a road that I had advised countless families to pursue since that day I started the foundation. “We will put his quality of life above all else.” Her words were clear. In light of what he faced, ALD is a fatal disorder; we would do everything humanly possible for our son to be loved, cherished, and enjoy each and every thing he wished to for as long as he could. Although I consider myself to be one of the most solutions oriented, proactive people alive, Jaymee had posed a scenario that I could not argue with. Doing anything besides showering him with love and affection made little to no sense. You see we understood what too many have also had to conclude. When dealing with this disorder, sometime it’s not up to Mom and Dad. At a certain point, the disease takes over and there is little more to be done other than hope and prayer. We let his school administrators know before the beginning of the term and were met with more accommodating comfort than I could have imagined. His grades were never below a C this school year as far as he knew. Every report card was A, B, or C, so as not to discourage him. His teachers displayed a level of caring for him from day one that we will forever be grateful for. He was a part of every class he attended and fit in at school as well as any other kid. Towards the end of the year we learned that many of his classmates, sensing that something was amiss, really took him under their wings to ensure that he was included in as much as he could be. Overall, it was his best year of school. Thanks to a good friend and ALD Dad, John Hirschbeck, a major league umpire, Logan had the privilege of attending a Houston Astros vs. St Louis Cardinals game towards the end of the 2010 season. After being escorted down to the umpire’s locker room, none other than Albert Pujols walked in, gave him a sweaty pair of batting gloves, signed a baseball and posed for a few pictures. Just after departing to prepare for the day’s game, Mark McGuire walked in, sat down, and talked baseball for twenty-five minutes. It is a day I won’t soon forget and am thankful to know a man like John. Despite what he and his family have been through, he has always shown himself to be a true friend and a real gentleman. In fact it wasJohn who told me, just two days after Logan’s diagnosis, that from that point forward there was no longer any right or wrong answers for me and Jaymee. He did not want us to second guess ourselves about any of the decisions we would be forced to make and to be completely honest, I have not received more sound advice from any other person as it relates to this situation since. John showed me a level of caring that is rare in this world and I feel I will always be indebted to him for doing so. Thus far, Logan’s form of ALD has surprised us. He has lost roughly eighty percent of his peripheral vision in both eyes but otherwise is physically unremarkable. While he is having balance issues at times, his gait appears intact so we feel quite fortunate. Of course, the significance of the disorder is evident in other, more profound ways. In that his behavior was the first issue to come to light, it has come as no surprise that this is the area where things have been affected the most. He is now suffering with dementia, has short term memory issues, repeats the same things, be it questions or statements with regularity, and mumbles answers to certain questions we ask of him, almost in a whisper. His sense of direction as been affected and his ability to reason was taken from him as though in an instant. Jaymee took our three year old Brennan; he was conceived using a technique that allowed us to screen out the chance of ALD prior to being implanted, to a birthday part one Sunday afternoon recently. Twenty or so minutes after they left, the doorbell rang. When I opened it I found Logan and a neighborhood father who asked me if I was Logan’s Dad. More often than not, this is not a good question. After going outside to speak with this gentleman alone, I learned that Logan had walked into this man’s garage, taken a beer out of the refrigerator, opened it, taken a sip, put it down on his driveway, and walked away. The fact is the boy was thirsty. What he was not able to readily understand was that the green can white can in the refrigerator was not a soft drink, but beer. When I explained what was at play the father understood but it gave us further pause as we became aware for the first time that constant supervision will be needed going forward. This is a devastating life event for our family. I feel I do need to add something rather important though. Our son is not dying of this disease. Instead, he is living each day and will hopefully continue to do so for some time. I can also attest to the fact that love is a more than powerful emotion. It has brought us closer together as a family. It has made me personally understand that in life, there are only so many little things that any of us can be concerned with. It has changed the way I run this organization and in the future will forever alter the type of husband, father, and man I am. We do our best every day to hold things together. Some days are easier than others but without each other, Jaymee and I would be lost. Marrying her was the wisest decision I have ever made. At her core, she is the strongest human being I have ever had the privilege of knowing. There will be many sad and desperate days ahead but together we will get through this. Comments(0)     Email to Friend