FightALD! Blog

I’m heading back out from Cincinnati next week and have my new itinerary posted on my website. Below is an e-mail I got in July and it shows me again that my efforts are paying off. I’ll be traveling through Kentucky, Alabama and Mississippi and am praying for good weather. I’d like to try to make one more trip out this year but it may not be possible between one of my annual fundraisers at the Green Flash Brewery on November 13th,  weather and flu season, but I will keep you all posted.

Date: Wednesday, July 7, 2010, 8:21 AM

Hi Janis.  We spoke in mid May.  You stopped by our office at the end of the day.  We spoke briefly about your mission and your family.  You graciously gave me more information regarding ALD.  What a God-send you are.  One of my pediatricians has just tested a infant boy for VLCFA.  The results were all abnormal.  The mother is a carrier.  I have since contacted the Kennedy Krieger Institute for more assistance for this family.

 I am so grateful for your visit.  Had you not come into our office, I probably would not know which direction to take to help this family.  Thank you so much for the education!  YOU have made a difference!!!

Sung to the tune of Simon and Garfunkle’s ‘Sounds of Silence’ but with the exact opposite meaning. I don’t know why most camp grounds are appointed right along the freeway, other than for convenience I suppose. My first night back on the road I was backed right up to one and it was soooo noisy. Not a good way to start the trip with no sleep. But I did and it has gone really well, actually.

My adorable daughter, Amanda, standing in the A of the GOLIATH roller coaster.

But before I left home I took my daughter, some of her friends and a father and son who were visiting us from Colorado to Six Flags Magic Mountain and we had a blast. We went on 10 roller coasters and noone got sick. LOL.

Sorry, I am really bad at updating my blog now that facebook has become my friend. Plus, when I am traveling I usually am so exhausted by the time I get settled in for the night my brain is mush and my ramblings would be pretty boring, I’m sure. Weekends are busy with laundry, housekeeping and trip planning.  I kind of feel like I need to be in the zone to be creative, so let’s hope I’m in it now.

The last 4 weeks on the road were very productive. Between my visits to medical facilities and the ULF conference, much was accomplished. Let’s see, I started out in Grand Rapids and travelled through Detroit and Ann Arbor. I was surprised that Michigan was a lot friendlier than I was anticipating and I actually enjoyed my time there. I contacted Fox News to promote my mission, but to no avail. Can’t quite figure out why the media has no interest in my story. Bummer.

I hit Toledo and made great headway there. I met with a few education administrators at the 2 Children’s Hospitals there who are now committed to helping me spread awareness. Then on in to Perrysburg and Maumee before making my way into Elkhart, Indiana. Now, everybody is always asking me if I have been anywhere that I could envision myself living and this place was surely one of them. Very quaint city on the Elkhart river with lots of shops and eateries in a historical downtown area.

Oh yeah, I forgot to mention that my refrigerator bit the dust while I was home the last time. I’d been having a lot of problems with it so it wasn’t a big surprise. I had to have that replaced and I also had a huge bubble on one of the rear tires and ended up having to replace all four of them. Then my axillary battery quit charging and sometime after that I developed a propane leak, so I did spend my share of time seeking out places to get things fixed. I pretty much lucked out too. I found a guy who came to me with the fridge and he gave me a couple hundred bucks off since I’m a charity. Discount tires honored the price I paid last year to replace my two front tires which saved me another couple hundred bucks. Turned out that a cable to the battery that connects to the solenoid to recharge it came off. And I was able to find a guy in De Kalb to fix the propane leak while I was at the ULF conference, so all in all, I am a happy camper again. LOL!

Okay, where was I? Oh yeah, I really liked Indiana and as I was driving into Gary I was smiling and singing that song that Ron Howard sang in the Music Man, you know, it goes Gary, Indiana, Gary, Indiana… but my smile quickly eroded as I drove through slum after slum after slum on roads so bumpy I’m sure that’s what caused the battery cable to fail and the propane line to burst. My GPS couldn’t even pick up a signal so I bailed after visiting 3 out of my 5 destinations there. I figured my safety was my number one priority. So then on into Naperville and Aurora, Illinois where I actually found a forest preserve campground just a couple miles away in Warrenville.

2 of my nephews on Bill's side, Andy and Tony.

That Saturday I drove up to my in-laws house in Pleasant Prairie, Wisconsin and spent the holiday and my b-day before joining the docs and researchers at the ULF scientific conference followed by the family conference where I got to catch up with friends I’ve made over the years but only get to see there. There are new therapies for ALD and AMN and other leukodystrophies with promising treatments on the horizon. It was very educational and inspiring to say the least.

That last Sunday I drove to Plymouth and then on into Fort Wayne on Tuesday. I found an RV park in N. Ridgeville, only 10 miles from the Cleveland airport where I stayed Tuesday night and was able to store the RV while I am home. I will fly back out on Aug. 2nd and resume my travels in Cleveland, Columbus, and Cincinnati before heading into Kentucky. I promise I will be updating my itinerary on my website before I take off, so if I am coming to a city near you, please let me know.

Read the rest of this entry »

Sorry I have been so bad at updating this. I keep starting to and then something else comes up so it has been a work in progress for a couple of weeks now.

WHEW! I managed to stay a little bit ahead of the storms but still got caught in the rain off and on and drove through lots of cross winds. Luckily, no tornadoes and no more floods. Our last night in Nashville, Bill and I decided to brave the storm and headed over to the Grand Ole Opry convention center to get a bite. I had been there for the National Assoc. of Pediatric Nurses conference  a few years back and thought Bill might enjoy seeing it. It was as I remembered, almost like being inside a slice of Hawaii. Waterfalls, rivers and palm trees. Quite magnificent. One problem, they only had one out of nine restaurants open because of the rain and electrical outages and they were on at least an hour wait. We had passed a steak house on our way there so went back there for dinner. It was closer to our campground anyway. And by the time we left the steak house it was pouring again. At some points it was raining 7 inches an hour if you can believe that. Once again, I have never been in such a downpour in all of my life. That night the Grand Ole Opry and Convention center both flooded. We were camping less than a half mile down the road and we are so lucky we didn’t get washed away. After confirming the airport was still open and Bills flight hadn’t been cancelled we were relieved to find that his flight was still departing on time. What we didn’t anticipate was that the freeway to the airport would be closed. So we had to find an alternate route, along with all the other traffic, so we were at a crawl all the way there but we lucked out and made it just in the nick of time. BTW, if it hadn’t rained most of the time, Bill would have worked on the RV. He climbed over it, he climbed under it, he grimaced at every creak and shimmy. Then the rain came! Haha. Once he realized he couldn’t do anything, he gave in. Mr. fix-it had to take a break LOL! And we really had a nice time together despite the weather. Played a lot of Backgammon, did a lot of crossword puzzles and actually ate pretty darn good. He says I should write a book of recipes for cooking in an RV. Yeah right. Maybe I should challenge Bobby Flay to a Throw Down. Haha.

A busy week after that in Bowling Green and Louisville, Kentucky. I stopped by another NBC TV station to see if they wanted to do a story but their camera men were all out on assignment. Everyone was covering the flooding disaster. I never got a call back from the station in Shreveport either so I am assuming they scrapped the footage they shot. It’s hard to compete with a 500 year flood. I saw one of the coolest things ever driving out of town. A huge pond had formed from all the rain and there must have been 25-30 deer all around. Some were bent down drinking and others were chasing each other through it. About the time I saw a place to pull over so I could take some pictures a semi traveling the other direction layed on his horn and scared the you know what out of me and the deer and I missed the photo op and there was no place to turn around for miles. It sure was awesome though.

IZA, KAROLINA AND PADRAIC (big sister Maia was away at college in the Netherlands)

That next weekend I got to go stay with my best friend from Boulder, Colorado, Iza, and her family who moved to Bloomington, Indiana and we had the greatest time. We biked to the farmers market and went on a 4 mile hike. Then the rain came again.

There were flood warnings announced for Bloomington on the radio as I was driving north into Indianapolis but I think they were being over cautious at that point. I really pounded the pavement alot there because of parking difficulties and had to stay in a hotel as there were no camp grounds within the cityand I was in Indy for two days with26 stops. I was glad to have a hot bath while listening to the rain outside so I wasn’t too disappointed about not camping.

One thing, no two things I can honestly say about the midwest. One. They love grass. And they love fresh mown grass. Every where. I have never seen so much road side mowing in my life. I mean along the highways and roadways in the middle of nowhere. And lawn mowing. And such massive lawns. Everybody has riding mowers. I’ve never seen so many women mowing lawns either. Two, such beautiful trees and so many variaties. With all this new this rain the trees are bursting with new leaves. Every shade of green imaginable and some of these trees are older than dirt, judging by their size. I know, trees can’t grow without dirt. Crazy.

Okay, so I am sitting here tonight, Thursday May 20th in my campsite at the Woodchip Campground (don’t let the name fool you, there’s plenty of mowing going on here too) and am preparing to store the RV tomorrow and fly home for a few weeks. I am exhausted and glad I don’t have to face one more day in the trenches for a while. I managed to add on a few more stops than originally scheduled so made it to 232 medical facilies. 22 more than scheduled. Crazy when the original goal was just a mere 215. But I guess I had to up the ante once I got in the groove. After all, the more the merrier right?

The owner of this campground is a pastor of a church and he donated my site for these two night plus one when I return and his daughter is giving me a ride to the airport tomorrow. That is a first for me. I’m lucky to squeeze a 10% discount out of most owners and that usually only amounts to about $3.50, so I am extremely grateful and appreciative of their support. I can go home now knowing that many more physicians will be educated about ALD and with the passing of two more boys over the last week, that means a lot to me and everybody affected.

My 6th annual golf tournament fundraiser is June 12 so I have my hands full when I get home with finalizing all the details for that and the next leg of this adventure. I need golfers, merchandise donations and hole sponsorships so please pass the information on. Details and on-line registration are available on my website. Some of my family is coming to golf and support the cause so there will be a welcome reunion and reveling as well.

Cheers until next month. Janis

From Hot Springs I drove in to Little Rock and stayed at this delightful campground. Such a great way to regroup after a tough day in the trenches. By Wednesday I got ahead of my schedule so when I picked Bill up at the airport we had some time to goof off at Graceland on Thursday before hitting the trail.

HOME OF THE KING OF ROCK AND ROLL

It was a lot more interesting than we thought it would be. We were surpised at how much he had accomplished in his life time and how many awards he had received. We toured two of his private jets and his car museaum as well.

ELVIS' PINK CADILLAC

This one was my favorite. Bill then got to see first hand what I go through visiting the medical facilities. Dealing with parking, mostly at the hospitals, and then walking for blocks to get there and then finding our way around inside and then back to the car. He was quite impressed with the reception I got at the Children’s Hospital in Nashville, as was I. The woman we met with hugged me and told us both how impressed she was with what we are doing. That felt great, again.

FINGER LICKIN' GOOD MMMM!

We ate BBQ at every opportunity. We had smoked ribs, smoked chicken, smoked pork and smoked brisket. We joked that when we belched smoke came out. We ate on the famouse Beale Street and then headed to our camp site near the Grand Ole Opry and started making plans for the weekend. Rain was in the forcast but we had no idea we would be in the 500 year flood.

THAT'S ME ON BEALE STREET!

It rained harder and longer than any storm I have ever been in. It would sound like it let up, but I’d look outside and it was still drenching. We lucked out that we didn’t get washed away.

Now, I’m going to have to finish this post later as they just announced over the loud speaker at my camp ground in Scottburg, that there is a high wind advisory this afternoon and a severe thunderstorm advisory for this evening, so I’ve gotta put some miles between me and that. TTFN!

Woohoo, here I go again!

I postponed my original departure so I could attend a Charity Rock Concert to benefit Fight ALD that was orchestrated and performed by my daughter and some of her friends at her school, Guajome Park Academy, on April 16th. They performed on the campus amphitheater stage and drew a crowd of nearly 200. Teachers, students and parents came together to show their support and I am deeply appreciative of their efforts. And boy did they rock and roll. We were all quite impressed with the show.
I flew in to Dallas on Monday April 19th and hailed a cab to take me to my RV which had been stored at a garage over the winter. I gave them a list of things to work on so it would be in A-one condition for this years travels. The cab driver got lost on the way and I had to pull out my GPS to get us there. He must have gone at least 10 miles out of the way but gave me no break on the fare of $58. Determined to start my trip on a positive note I just paid him, although I did badger him a little. I mean come on, he’s the one who should have had the GPS, right?

That was nothing compared to what hit me next.  The bill for the repairs was $4200 and change. I’d have swallowed my gum if I’d been chewing any. Although I had given them a list of things to check out, I had no idea they would take it upon themselves to do so much and then not even give me a break on the charges. But I stayed in my Zen (It is what it is, It is what it is, OHM!) and all in all, I am glad to have the RV running really well. My refrigerator is working well (I lost two fridge fulls of groceries last summer cause it conked out in the humidity), I have a new hot water heater and they patched and clear coated the entire top of the RV which it really needed. Those repairs along with other minor stuff sure added up, but after getting stuck in a horrendous thunderstorm in Arkansas a couple days later, you may have heard about the tornado warning on the news,  I was really thankful to have that done. I took this shot of the sky all lit up from the lightening in the middle of the night. What a show it was, but it was a little scary I must confess. It is impossible to sleep in this tin can when it storms like that.

By the time I drove out of Tom’s RV it was 4:30 PM and too late to start visiting any medical facilities so I went to my camp ground and checked in. Still in my Zen! Later that evening I met up with Sawyer’s first grade teacher and her husband, who now live in Texas, for dinner in Mesquite, a suburb of Dallas. It was a very enjoyable evening. We had some great laughs as we remenisced about silly Sawyer and his very active imagination. He always told her “I have a question and a comment” about everything.

GAY AND RITCHIE GALLAGHER

BEAUTIFUL TREE LINED DRIVE FOR MILES AND MILES

Over the next three days I hit all the medical facilities on my route and was back on schedule by Friday morning after having visited 33 medical facilities in 3 states during that time. As  my husband says, I’m an animal. LOL.

I drove by KTAL Channel 6 the local NBC station in Shreveport and decided to pop in and tell them about my journey. They were very excited to do a story about my quest, although I haven’t been able to locate it on their website yet. I’m going to call the senior producer tomorrow to find out if they aired it yet with so much storm coverage and other late breaking news here. I hope to get a copy of it and post it here.

The drive through Missouri was suprisingly pretty. It reminded me a lot of Oregon. I stopped to take these photos of the Red River in Bossier City.

Then on to Texarkana and into Arkansas where I have been camping in Hot Springs all weekend. Tomorrow I head into Little Rock and am sooo glad that I wasn’t there over the weekend. They also had Tornado’s.

Since my husband is such a BBQ/Smoker finatic he is flying out to meet me in Memphis and will ride (and eat) with me on my route and experience first hand what I do. I’m really looking forward to having him along although I keep telling him, you are going to shadow me, not manage me. Maybe he should bring a tent just in case haha!  We’re going to camp out at Graceland in Nashville over the weekend and he will fly home Monday morning as I head into Kentucky and Indiana. I’m determined that this is going to be an easier, gentler trip this year. I learned my lesson after losing about half of my hair from stress last year and what I didn’t lose is now grayer. I think I can accomplish what I have set out to do without taking the entire world on my shoulders. We’ll see.

One of the last stops I made on Friday was at Mercy St. Joseph’s Hospital in Hot Springs where I met with the director of education. As soon as I told her what I was doing she was like ” How cool is that? What can I do to help you?” So she took extra flyers to share with the director of education at the VA hospital in Little Rock. I just love it when someone so totally gets what it is I am trying to get accomplished and they go the extra mile to help. Makes my job just that much easier and fulfilling. We need more medical professionals like her, for sure!

Well, after a nice respit from traveling I am ready to continue on with my Fight to educate medical professionals across the U.S. about ALD. I will pick up where I left off in Dallas on April 19. The RV has been in a storage and repair facility all winter and I expect it to be in good working order upon my return. I will visit 210 medical offices and hospitals across 7 more states on this, the fifth leg, of my adventure. We are kicking off the trip with a Fundraiser Rock concert performed by my daughter and her school mates in 3 different bands at the Amphitheater of Guajome Park Academy in Vista on Friday, April 16th at 6:30 PM. This was their idea and I am thrilled that they have taken an interest in what it is that I am trying to do. Next on the agenda will be my 6th annual golf tournament at Twin Oaks Golf Course in San Marcos on June 12 upon my return to California. Details are available on my websites Events page. Please continue to send me your comments as they mean a lot to me. It gets kind of lonesome out there on the road all by myself. CHEERS.

Scientists in France have had success in using gene therapy in two boys with ALD. Here is the article from the LA Times.

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!