A lot has happened since the last update.
First I want to report with great sadness the passing of Dr. Hugo Moser on January 20th. He leaves behind a legacy of accomplishments, yet for some reason we’re told he felt he didn’t do enough while he was here. We truly hope that deep down he knew how revered he was before he passed away. There are many children and now adults whom would not be alive today if it weren’t for the tireless dedication and contributions of Dr. Moser and his wife Ann, and for that I think I can speak for all of us and say that we are eternally grateful. Words cannot adequately describe his accomplishments. He was truly a great, great man and I am glad that I had the pleasure of meeting and speaking to him several times before he passed away. He will be sorely missed by those who knew him as both a man and a medical professional.
Here are several articles and press releases related to his passing:
http://www.kennedykrieger.org/kki_misc.jsp?pid=6101
http://www.kennedykrieger.org/kki_news.jsp?pid=6102
http://nwitimes.com/articles/2007/01/24/news/lake_county/99dc56eba0e764048625726c007d6d4a.txt
Information about services and where to send donations is listed on the ULF website.
Now to more upbeat matters. I’ve said numerous times that one of Angie’s and my goals is to spread awareness about CTX through whatever means possible. There is a show that airs on the Discovery Health Channel called Mystery Diagnosis. This show is presented in a semi documentary fashion with family and individual interviews with some dramatized scenes using actors or actual family members to convey the subject matter. The show is about individuals and families who’ve had an experience with a rare illness and the journey that they went through to finally get a diagnosis. I have been a long time fan of the show and have always thought that our story paralleled many of those that I had seen on the show. I had made some attempt early in 2006 to try to figure out how one would go about getting in touch with those involved with the show. They didn’t seem to have a separate website and most of what I could find was simply the show schedule as it exists on the Discovery Health Channel’s main site.
In September of 2006, I found a link to the show on the IMDB(Internet Movie Database) website. This site lists various facts about movies and tv shows, including some cast and crew information. Using the information I was able to get in touch with one of the shows producers for 2005. At the time they were not in production but she told me that she would pass my information along to the current crew.
In late October/early November we got a call from one of the shows producers who informed us that they are interested in doing a segment about CTX and our family for the show! This was very exciting news. We’ve since been through initial interviews and have gotten official approval from the Discovery Health Channel to go ahead with the segment. We are expected to begin filming within the next 4-8 weeks.
Next, back in July during the ULF conference Paula had a representative from the Make-a-Wish foundation come and speak to the conference attendees. We learned a lot about the organization, including that it wasn’t necessarily for children who are terminally ill but also for children with chronic potentially life threatening illnesses. Knowing that, Angie and I decided to submit Ashley for a wish. Shortly after they reviewed all of her information, they approved her for a wish experience. The foundation in Oregon is a bit limited in the types of wishes that they will grant – nothing out of the United States and no Disney cruises. After lots of thinking, Ashley has decided on a cruise on the Freedom of the Seas, one of Royal Carribean’s biggest and newest ships. It’s an amazing vessel with all of the latest amenities including an on-board water park, a surfing machine, and especially for Ashley, a teen kids club. It should be a blast and we all look forward to some R&R to be able to forget about life for just a little bit.
Last but certainly not least, Paula made an announcement in the last ULF newsletter that there will be a CDCA manufacturer by the end of 2007. This certainly does help alleviate some concern however I remain cautiously optimistic as it’s a long road between here and there and if history is any indication, there is likely to be bumps along the way. Nonetheless it is great news and evidence that with the work that Angie and I have done to raise awareness along with the help and resources of the ULF and the FDA that when you work together that nothing is impossible.
That’s all for now, I’ll be sure to post more info as the air date for Mystery Diagnosis gets nearer.