FightALD! Blog

I rocked out to Beethovan’s 5th Symphony in C Minor performed by the Boston Philharmonic while driving across the beautiful state of Nebraska. How inspiring is that?

And now I finally have an internet connection, yippee! I’ve been trying to add a new post all week but none of the campsites I’ve stayed at had a strong enough connection to do so. So let’s see, where do I start.

It rained alot while I was in Albuquerque and Colorado Springs. I did not know that it was so windy all the time, either. That is quite the challenge driving big red with the cross winds I must say. Other than that, the drive was really pretty.

I met up with my husband and Amanda in Boulder and was pleasantly surprised to find that my step-daughter, Jennifer, had recently moved back there and we all spent a lot of time together. The fundraiser at the Westend Tavern didn’t turn out as planned. Poor communication I guess. They overbooked the room we were to be in and instead of starting at 6 we didn’t get in until 7:30. No help from the three newspapers I sent my press releases to either, so I don’t know if we actually made any money or not. Still awaiting word from the tavern.

We met up with a lot of old friends (and some young LOL) over the weekend, some whom we hadn’t seen since we moved away in 2000 and it was fun to see how much all the kids had grown. Unbelievable actually. Most of them are now taller than me, how rare. Boulder is a beautiful city and it was fun to be back for a while.

After Bill and Amanda headed for the airport on Monday morning I pulled out in Big Red and visited 10 medical facilities before setting up camp in Loveland, CO. where I was kept awake by the intense thunder and lightening storms all night. What a show! There was even a tornado warning for Fort Collins so I was glad I camped in Loveland that night. The next morning I continued north through Fort Collins and into Cheyenne, WY. I am thrilled to report that the only attention Big Red has needed is gas and oil, in large quantities of course, but hey, I get around 7 miles to the gallon. The work my brother had done on it in Phoenix has really made a big difference and it has been purring right along. Of course, the terrain is a lot flatter here, which helps too.

In Cheyenne I met up with Jaimie’s little sister, Margaret, who also has AMN and whose little boy has ALD but is doing marvelously and is in the Lorenzo’s Oil clinical study. That has been one of the highlights of my trip to meet up with other families who have been affected by this disease because we are, in essence, one big family. I was also contacted by a family in Scottsbluff who are immersed in the caring for their son after a BMT, but unfortunately was not able to meet with them as they were too far off my route.

Driving toward Lincoln, Nebraska I got a phone call from the education coordinator from the University of Texas in Lubbock who had received the brochures I left in her department. She told me that her residences were graduating next Wednesday and after learning about ALD decided to dedicate their final day of school, Tuesday, to ALD. She rented the movie, Lorenzo’s Oil, and was distributing my brochures to her students and taking them on-line to review the information on my website. WOW!!! That proves that I am making a huge impact on some of those I am coming in contact with on this journey and makes it all worth while.

Speaking of which, I will let you know that I have now been through 13 states, 107 cities, 231 medical facilities in a little more than 7 weeks and I honestly believe many more boys will be tested for ALD this year before they start exhibiting symptoms.

I spent some time yesterday with Paul, a young man who I know from the ULF Conferences who lives in Lincoln. He lost a brother to ALD and has been dealing with AMN for years. He is an inspiration for so many who struggle with this disease. Although he is in a wheel chair, he is a triathalete among other things and is going for his scuba diving certificate this weekend.

Today I will visit the medical clinics in Omaha and head into Iowa next. And as you all know, I love you and I appreciate your comments, your support and encouragement.

This entry was posted on Saturday, June 27th, 2009 at 8:14 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.