Well I am back home now, for the winter. Oklahoma was awesome. Every where I went I was welcomed with open arms. The university hospitals are adding ALD education to their teaching curriculum. Many of the family practices I visited have residency programs and they too are adding it to their curriculum. I even visited the Oklahoma School of Medicine and passed on my brochures to the Dean’s assistant. Very encouraging, to say the least.
I headed into Texas with the expectation that I would wind up in Memphis and head home from there with enough time to organize my fundraising event at the Green Flash Brewery next month on the 14th. I would then head right back out for three more weeks, but, as I traveled through Fort Worth and Arlington each day the clinics were more and more packed with sick kids and I realized that they were already in full swing of the flu season. I did not want to be exposing myself to that, especially after having been so sick in Colorado Springs. No fun at all.
So with that said, I put the RV in storage in Dallas where they will also do some repairs and I am now home for the remainder of this year and glad to be. I forgot how much work it is to pull the Green Flash event together so I haven’t had a whole lot of time to catch my breath, but it is great to wake up in my bed each morning. I plan to head back out March 1st, weather permitting and expect that I will have my entire itinerary completed for the remainder of the tour by then. That should make my short breaks at home more relaxing.
The ULF (United Leukodystrophy Foundation’s) annual conference falls on the same weekend as the fundraiser this year and I was very disappointed that I would have to miss that, but I got an e-mail from Ann Moser of Kennedy Krieger Institute this morning informing me that the scientific symposium in on the following Monday, so YIPPEE! I will be able to attend that portion of it, which is the main reason I go each year any way. It is with many doctors and researchers who specialize in ALD/AMN from around the world and will be very educational. I will share the information with you all when I come back.
I had a horrible experience yesterday. I had received an e-mail a couple of days ago from the senior producer of a production company that films segments for public television, informing me that they were filming a one hour segment highlighting 5 orphan diseases and were interested in having me as one of their guests. I was thrilled at the opportunity and responded with my phone number. After playing phone tag a couple of times, finally had a conversation yesterday morning. The senior producer walked me through their website, which was very professional and included many clips from previous shows with past presidents, famous people and diplomats, as well as humanitarians and non-profit organizations. He outlined all the benefits of my involvement, from being featured during commercial breaks on the Larry King show to having my message and video stream of the show sent to 1 million pediatricians, endocrinologists, nurses, etc. But, all of this would come with a price. They would wave fees for this and for that but ultimately my expense to help cover the costs of advertising, filming and so on would be $22,900. My first reaction was hell yes, I couldn’t possible get that kind of exposure on my own. I would need to fly to their studio in Boca Raton for the interview and they would send a film crew to Dallas to shoot footage of me and the RV there and they would also wave the $3500 fee for that. He told me my story brought tears to his eyes, that he would personally oversee the filming of my segment, that he wanted me to meet his family while in Boca Raton and I bought into every word. He even spoke with my husband and aleviated some of his apprehensions, but, after the dust settled and I did my due diligence I realized that there were safety nets in the contract for them, not for me. The key sentence was this; “Your educational commercial segment will be broadcast once prime-time in over 84 million homes and will air 400 times in many of the top DMAs during peak and prime times via MSNBC, CNBC, Fox News ” and here’s the clincher… “or equivalent network.” I found an article on-line that was published in the New York Times about a production company preying on non-profits. So I went from being ecstatic to furious and I had a hard time shaking it off yesterday. After having my sons memorial at the baseball field where he played little league vandalized and graffitied twice and the tree stolen, I didn’t think anybody else could stoop so low, and I am horrified to find I was wrong. I’m just fortunate that I came to my senses before dishing out any cash. I sent him an e-mail cancelling the contract with a link to that article.
So, now I focus on the positive and continue with my fight knowing that my mission has been and will continue to be successful. I will continue to post here even though I am not out on the road so please check back from time to time. It would be great to hear from some of you out there. It has been pretty quiet on the receiving end for me and your words of support and encouragment always mean a lot to me. Ciao for now!