FightALD! Blog

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!

This is a link to the latest article about my journey. It is one of the best ones.

http://www.nctimes.com/news/local/vista/article_d896c761-54c7-53c6-b4be-abcacf840882.htm

GORGEOUS SUNSET IN MISSOURI

It has been a busy 10 days back out on the road. I’ve hit about 75 medical facilities so far and although most have been very receptive I have bumped up against a few walls. It just makes me want to scream when I am told there is a strict “No Solicitation” policy in place, period. That’s what I was told in Springfield and again in Topeka where there is a monopoly on their healthcare systems through CoxHealth and St. Francis. But, not one to take NO for an answer I pestered the peons until I got to the decision making people and I was successful at influencing them with my mission and my message. It sure is frustrating and exhausting, though. But the successes far outweigh the hassles. At one hospital in Kansas City the director of security escorted me to the education directors office and introduced me. When I mentioned that I was having some difficulty with the “No Solicitation” policy at other hospitals, he simply stated that although they too have that policy, common sense dictated that what I am doing is educational and would be good information for the doctors to have. Right On! He also told me I would probably have a hard time parking at the Mercy Children’s Hospital and he gave me the number to security there so they could help me out, which they did. I need more dudes like him on my side!

BLACK EYED SUSANS GROWING WILD

I did get my brochures into the right hands at the University of Kansas Continuing Education department and School of Nursing as well as some teaching hospitals so it is all good. I was able to take yesterday off completely and I feel rejuvenated this morning. I was able to do my laundry and clean the RV and have a little R & R. On the drive into Wichita I visited El Dorado state park and took this picture from the window and captured the flowers in the rearview mirror, too. Last night it started thundering and lightening and this is what the sky looked like when

OMINOUS CLOUDS OVER WICHITA

I got up at 7:00 AM. I’m not too psyched to be in a storm in Kansas. They have warnings for severe weather and shelters everywhere. I’ll be glad to say, “Toto, we’re not in Kansas anymore!”

I will make 10 visits in Wichita today and drive into Wellington and then Oklahoma. I also need to have the RV worked on again as it has developed a transmission fuel and oil leak and it sure would be nice to have my cruise control functioning again. So TTFN!

As I’ve said before, time flies when you’re having fun. It was another whirlwind trip home. I got into St. Louis too late to visit any of the facility’s on my list except for one. I had arranged to leave the RV at a Truck Repair shop while I went home but when I showed up to drop it off the service manager told me they don’t work on RV’s. Someone should tell the woman working the phones. He was very nice and offered to let me store the RV there for free while I was gone, which I did. I made some calls when I got home to see if I could line up a place to take it when I returned but wasn’t having much luck. I called back to the truck repair and left a message for the manager I had spoke with to see if he could recommend something. He not only could, but he also arranged to have the RV delivered to one place to have the shocks and gas tank replaced and then to have it delivered to another place to have my stove and plumbing repaired. What a great guy. Unfortunately, everything was not done to satisfaction when I picked it up. I was even told that my refrigerator wasn’t working and it was full of mold but didn’t know if it was because it was turned off or broke. Wouldn’t that have been nice to know prior to picking it up, especially since they had it for a freaking week???? Turns out they turned it off to fill the propane tank and never turned it back on. DOH!

Alright, I’m calmed down. I just find it messed up that people are taking advantage of the fact that by the time I realize things aren’t fixed correctly I’ll be long gone.

GHOST PIRATE SHIPS PERHAPS???

On the last leg of my trip I passed this weird wooden sculpture kind of thing at a nature preserve. I have no idea what it was but it looked interesting. I also stopped in at Abe Lincolns home while traveling through Lincoln, Illinois.

HOME OF PRESIDENT ABRAHAM LINCOLN

Didn’t he live in a log cabin? Oh well, it sure looks huge.

The fundraiser at the Stone 13th Anniversary Beerfest was a huge success and a lot of fun. The support and encouragement I received from the fans and the employees is phenomenal. My volunteers love working the event and we always have a good party at our house afterward. Not to mention, Stone will throw a volunteer appreciation party next month too.

MISSOURI SKY LINE

So I am back on the road and raring to go. Missouri is a beautiful and lush state but I swear you can see the humidity here. Just look at this photo. That isn’t fog folks. The fall colors are starting to arrive and I can imagine what it will look like down the road. I’ve been through Cuba and Lebanon which I didn’t even realize were in Missouri and St. Louis, Sullivan, and Rolla  and so far the reception has been awesome. The stops I had on my list for today in Springfield are medical clinics attached to hospitals but aren’t open on weekends, so I will begin my visits there early Monday before continuing on toward Kansas City. I took advantage of the down time and went to the Wild Animal Safari today. It was awesome. Like how the San Diego Wild Animal Park used to be before it went all commercial. First you do a walking tour that takes about 45 minutes and you get to feed the animals through a fence. Then, you drive along a 5 mile stretch around a lake where the animals are roaming free and come right up to your vehicle wanting food. Some were kind of scary like the camel and the water buffalo that came right up and slobbered on the window. I took photos with my phone and will add them at a later date.

My local newspaper is doing another article about the trip which should go to print in a couple of days. Check the NCTimes.com website. The reporter never got a chance to meet with me before I left so she did a phone interview today. The photographer came by my house as I was about to leave for the airport so I can’t wait to see what that picture looks like… not. Tomorrow is a goof off day, sort of. I have been told that I cannot leave the area without a visit to Branson and take the Duck tour and visit the Titanic Museum. I’ll let you know how that goes on my next post. Love to you all. This fight for awareness is for all of us!

That’s how a lot of people I’ve met refer to me. In fact, that’s how I strike up conversations at the medical facility’s sometimes. That usually get’s their attention, especially when I tell them I’ve been through 19 states and over 435 medical facility’s in 12 weeks. It has gotten easier to get to the right person faster now that I can toss around those statistics. I am on a mission! It’s actually scary how few know about ALD, but that is changing.

I don’t know where the time goes. I can’t believe it has been so long since my last post again. My journey is very eventful and it is hard to keep up with myself. I often don’t even know what day of the week it is until I check my itinerary. I’m not kidding.

I had a great time with my daughter, friends and family in Galesburg and Centralia. The birthday bash was a hoot even though it poured and drenched us all. The weather pretty much stayed like that throughout the week while I traveled around Wisconsin. I did not care for Milwaukee so much. Rough roads, lots of construction and lots of traffic. Madison on the other hand was quite nice.

MADISON, WISCONSIN

It kind of reminded me of Boulder, Colorado. Bike paths and outside malls and eateries everywhere. I caught a glimpse of what must be the state capitol building through the trees on one of  the avenues I drove down.

The RV was bumped around so much again I thought I should probably get new shocks before it just rattles apart, so I headed back to Pleasant Prairie where my in-laws live and my daughter was visiting, but alas the garage couldn’t get the parts until the following Tuesday and I didn’t want to delay the trip any more. I decided to just chill out for the weekend and resume my trip on Monday and was glad I did. Chicago was a difficult city to be travelling around in an RV in. Parking was ridiculous and the drivers there are some of the worst I have encountered, ever. Worse than L.A. Frankly, I am surprised I didn’t get in an accident. Every time somebody cut me off I just thought “Go ahead, your car’s going to look a lot worse than mine.” Plus there are bicyclists and pedestrians everywhere who think they all have the right of way. BTW, I didn’t handcuff myself to Oprah’s studio door. I couldn’t find a place to park! LOL!

LAKE MICHIGAN

I camped on Lake Michigan Sunday, the night before heading into Chicago. I took a nice long walk along the lake and although it looked ominous it didn’t rain, but as soon as I prepared for a bonfire it did, of course. The sky was amazing and I took this great shot of the clouds on my phone if you can believe that.

RAIN CLOUDS OVER LAKE MICHIGAN

Once I was in Chicago there was nowhere to camp and only parking garages at the hotels in the downtown area so I had to drive 20 miles out of town to find a place to stay where I could park the RV. I didn’t get any responses to my press releases again. I called ABC and FOX news stations Monday morning since I would be in Chicago for two days. I left a message at FOX but actually spoke with someone at ABC. He said he would check out my website and see if it was newsworthy. No call back so I called him again Tuesday morning and was told it isn’t a story they’d be interested in because I wasn’t local. I said ALD is not a local issue it is a global disease and had I seen the information on the news when my son was exhibiting some of the symptoms  I would have asked for the blood test and he would probably still be alive. I was not happy with this reporter. He said he might revisit the idea, but he didn’t. When I pulled up to my last stop at the La Rabida Children’s Hospital there was an ABC news van parked out front. I drove by real slow about 3 or 4 times and then found a place to park. I went up and knocked on the passenger window where I saw a female reporter sitting. She rolled down the window and I told her about my crusade and how I was told it wasn’t news worthy. She was shocked and thought they should absolutely be covering it, but alas, I was on my way out of town and it wasn’t going to happen that day. She passed the information on to the news editor and said maybe I would hear from him later this week. Nothing yet.

I was so glad to be driving away from Chicago, I could just feel the stress melting away. The visits I made there were great but the driving, not so much. I stopped in Oak Lawn, Bolingbrook and Joliet and drove in to Pontiac where I camped last night. Today I will head to Bloomington, Normal, and Springfield and head toward St. Louis. There I will call it quits and fly home on Saturday. That will wrap up the 3rd leg of the trip with an overall total of 450 stops in 178 city’s through 20 states across 12,000 miles.

So I leave you with this one last thought until I get back on the road next month.

Tank of gas - $90

Camping - $36

Maintenance - $$$

Educating the docs - priceless!

And it is going to take some time to get through this one. I have 63 stops here alone. I was scanning through my past posts and saw the one where I was boasting that I had made 30 stops in 30 days and I cracked up. I just made 88 stops in 9 days on this leg of the trip. Who knew?

HISTORICAL DOWNTOWN DES MOINES

Iowa is a pretty state. I was really suprised to go downtown Des Moines on a Sunday morning and find it virtually empty as you can tell by the parking lot. You can’t really tell by this photo but the domes on the building are shiny gold and really pretty.

AN INTERESTING MONUMENT

I walked around the Veteran’s Memorials and snapped this photo of one of the many monuments and statues. I was able to get caught up from my delays in Minnesota by visiting the hospitals in Des Moines on Sunday and the clinics Monday morning. I was directed to the corporate office of the Iowa Health Center by one of the office managers at a pediatric clinic I stopped at. I wasn’t very happy about that but it turned out to be a blessing in disguise. The woman I met with was very intrigued with my efforts and the information and she offered to distribute my brochures to all of their clinics for me, which enabled me to move on to Newton and Cedar Rapids a little sooner. I got to my camp site at a reasonable hour for a change. I camped on a lake at Sugar Bottom about 10 miles outside of Iowa City and took a dip before dinner.

PEACEFUL AND RELAXING EVENING, YEAH!

This is a photo of the sunset. The next morning I made my way through the hospitals and clinics in Iowa City and met with the education directors at one of the major clinics and at the University Of Iowa hospital which has 700 residents in training. I struck the mother lode once again. I moved on to Davenport and then into Moline, Illinois where I picked my daughter up at the airport and headed to Galesburg to visit my mother and sister-in- laws for a couple of days. We are heading out tomorrow and will visit many facility’s as we make our way south to Centralia. There we will meet up with friends from Vista and their family’s to help them celebrate a double momentus birthday for two sets of twin sisters. One set turned 40 recently and the daughters of one are turning 16. That should be a hoot. We will then head north to Wisconsin on August 3rd and visit more in-laws in Pleasant Prairie. My daughter will stay there and fly home on the weekend while I continue on my journey on the 4th.

I’ve sent out more press releases and wait with anticipation to see if I will get any responses. I’ve been thinking that perhaps I should handcuff myself to the entry doors to the Oprah studio in Chicago to get some attention. It seems everybody is more interested in the split up of Jon and Kate than they are with my plight. But that won’t stop me from trying, hah!

Dear Janis,
I just wanted to let you know what a sincere pleasure it was meeting with you today. I find it absolutely amazing that you are keeping your sons legacy alive by helping to save future children’s lives…. Literally. Your visit with me literally gave me the chills and I instantly went to your website to look around. Please keep fighting the fight… you ARE making a difference and you are an inspiration.
I also noticed that you are going to be visiting Aschinberg Pediatrics in Joliet, Illinois in the coming weeks ahead. I was born and raised in Joliet, and my children were previous patients of Dr. Claude Aschinberg, the founder of the clinic. When you do arrive for your visit there, please ask to speak with the head nurse; Gail. She is a personal family friend of mine and she has a heart as big as Texas. Please tell her I told you to ask for her and that she won’t be disappointed after meeting with you.
I wish you continued success and hope that God blesses and keeps you safe on your journeys.
Sincerely,
Jennifer Pawloski

Jen Pawloski
Billing Department Supervisor
Pediatric Group Associates

Moline, IL

I’ve made it 10,000 miles as of this week! What a ride.

Guess what I did yesterday… if you guessed got my nails done, you’d be wrong. If you guessed I sat in an RV repair shop again, you’d be right. I had the RV checked out by a mechanic in Fargo while I was back in Vista and he put in the rebuilt carburator and replaced the fuel pump, but I guess he didn’t notice that the spark plug wires were falling apart. But, I lucked out and found another really nice mechanic who dropped what he was doing and got right on Big Red and had me rolling within a couple of hours. Between the weather and the roads here I’m afraid to think of what might be jiggling loose next. And as I write this, hail the size of marbles are dropping from the sky and lightening and thunder cracking right above me.

HAIL OF A WAY TO START THE MORNING!

Minnesota is an interesting place alright. Everybody here talks like Louie Anderson but they’re not as funny as he is, ya know. And the weather has been rainy most of the time. So between the weather and the RV repairs, I am at least a day behind my schedule, which by the way is posted now if you want to see where I am going on this leg. More stops in fewer states and a real zigzag route as my daughter will be joining me for a bit and we will be visiting family and friends in Illinois and Wisconsin.

LAKE DETROIT IN DETROIT LAKES

Today I will be visiting a few more hospitals and pediatric clinics in Minneapolis and then I head to Rochester, then Ames, Iowa. I wasn’t very welcome at the St. Paul Children’s Hospital yesterday. The stiff shirt at the desk had specific protocol to follow and he isn’t the type to bend the rules, at all. I did manage to get him to give me the phone number of the education directors at both St. Paul and Minneapolis hospitals and after calling Minneapolis was given directions to the edu department where I was and so I was able to pass the brochures on directly there and will meet with the director in Minneapolis today. Nobody is going to turn me away after I have travelled this far to bring them information about ALD, by cracky! And especially after weathering the elements here.

CRAZEE DAZE

I passed through a little town called Brainerd and saw this sign in the center of town advertising an event that featured a paper plate toss. I didn’t stick around there long. I was kind of afraid to meet any of the locals that do that as a sport. I also drove through the town of Sawyer and this was the city center.

Well, I need to get back on the road, so I will try to post again soon. I urge any of you to contact Oprah, Ellen, Matt Lauer, Larry King, People Magazine, you name it, and tell them about my journey. Ciao for now!

I don’t know where the time has gone, actually. My schedule has been so hectic that I haven’t had time to update my blog in forever. So where do I start this time? I completed the second leg of my trip and flew home from Fargo, North Dakota on July 2nd.Enroute to Fargo I was driving along the freeway heading from Sioux City, Iowa into South Dakota when I spotted a Fox News building off to the side of the road, so I took the next exit and drove over to it. I have done this several times along the way only to find the doors locked, so I wasn’t very optimistic, but lo and behold, it was open. I went in and told the receptionist that I thought I had a good human interest story for them and explained what I was doing. She called the news director to come up and after interviewing me he agreed that my story was news worthy and had one of his camera men come out and do a quick interview. I made it on to the news that evening and I have ordered a copy of the story and will post it on my blog when I get it. It is very short, but I am pleased that I got some air time at all.

The 5th anniversary/annual golf tournament fundraiser for Fight ALD was on July 11th so I was incredibly busy with pulling everything together for that. It is always a lot of work, but also a lot of fun.

MY LOYAL VOLUNTEERS!

I have a great group of volunteers that help me with the event every year and I truly couldn’t do it without their help. The event was smaller this year, but it was a gas and we still raised some money. My parents and brother came to town for the event as well and it was great to have them here. The rest of the time I was working on my itinerary for the third leg of my trip, printing and folding flyers and preparing for the next four weeks on the road. I don’t have it posted on my website yet, but will try to get to that some time this week. I have a lot of stops this time as there are many Children’s Hospitals in Minnesota, Wisconsin and Illinois. I still need to finish mapping out my stops for the final week of this leg, but already have 184 by the time I reach Springfield Missouri. I was fortunate to get hooked up with a friend of a friend in Fargo where I left the RV and he was able to get a mechanic to do some maintenance and install the rebuilt carburator for me so I anticipate a smooth journey in that respect. I have truly been blessed with the folks I have met along the way. The support and encouragement have been phenomenal. And I am happy to report that at this point, I have been to 260 medical facility’s in 16 states in all. And to be adding close to 200 on the next leg in only five states is a bit over whelming I must confess. The further east I go the more dense the population, hence the more facility’s to visit. But it is so worth it. I am fighting the fight for all the boys yet to be diagnosed! And with that comes hope.

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.

GOOD MORNING ALBUQUERQUE!

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.

RAINBOW OVER COLORADO SPRINGS

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.

SNOW CAPPED ROCKIES

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.

CORN FIELDS FOREVER

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.