AWESOME MEETING IN BOSTON

September 24th, 2013

It’s been a while, again, since my last post and a lot has happened. I told you then that I was flying from Austin to Boston for a 3 day meeting in June with the ALD-AMN Global Alliance, bluebird bio and ALD Connect, all sponsored by bluebird bio. It was an awesome meeting. Great to finally meet the people who run the other organizations that have signed on with the Global Alliance since we first created it last year. We have conference calls every 4 months but had only met face to face with the original 6 and we now have 12 which include foundations from France, Germany, Australia and the UK with the others stationed in the US.

Bluebird bio announced they had finally secured federal approval to bring their gene therapy for ALD to the states and they have begun enlisting candidates for the study in the US as of last month at Boston General Hospital. They will soon take patients in LA, France ans Spain and will cover all costs for the patient and family to travel to one of the facilities. This treatment is much less invasive than Bone Marrow Transplant as it utilizes the boys own stem cells and inserts the missing ABCD1 gene through a viral vector that is binded with a dead or disease free form of the HIV virus. They have been able to inject two copies of the missing gene, better than the clinical study they did successfully in France, with the belief that the boys will then make the missing enzyme that breaks down the VLFCA’s (Very Long Chain Fatty Acids) that are the culprit of this disease. These VLCFA’s  (which are toxic in abundance) never enter the peroxisome in the cell where they would normally be broken down in to smaller chains which causes them to attach to tissue, organs and the myelin sheath of the brain. You may already know that but I wanted to break it down for anyone who doesn’t. All of the other therapies that have been tried over the years have not been able to cross the blood/brain barrier and this HIV viral vector has that capability which hopefully will prove to be a life saving cure for this disease. In the France study, they even saw reversal of myelin damage in some of the boys. If it proves to be successful, hopefully within 4 years, they will include adults in a new study as the latest statistics show that 50% of males with the adult onset will also develop the cerebral form of the disease. That is up from 15% that they estimated only two years ago. And in fact, any one who has the ALD gene will develop some form of the disease, eventually. My mom has been battling it for years and now walks with a cane, but otherwise does pretty well. Her brother, my uncle Lonnie, died at the age of 55, before Sawyer was even born, with a (mis)diagnosis of debilitating arthritis and unknown brain disease. And my mothers mother suffered for years from what her doctors diagnosed as degenerative disc disease.

If any one of them had been accurately diagnosed, we could have screened Sawyer for the disease. And that my friends, is why I have spent the last five years on the road distributing educational brochures to over 3000 medical facilities across all 48 states. Still trying to get on either the Today Show, Good Morning America, Ellen, Steve Harvey, People Magazine, you name it. Anybody reading this that might have connections or wants to nominate me for somethingorother, haha, go for it, please.

The other part of the meeting was with doctors (mainly neurologists) who specialize in treating patients with ALD and who have realized that there are not enough doctors in enough locations around the US to treat patients as most have to travel to either Boston, Minnesota or Baltimore for treatment or stay local and see doctors who really don’t know how to treat them. Especially the AMN community. I have heard many times that these patients are treated like it is all in their head, only because their doctor doesn’t know anything about the disease.  The goal of ALD Connect is to encourage other doctors to take ALD and AMN on as a specialty by providing a training portal on their website. I will be helping them with recruiting physicians when they get their website up and running. I’ve made a few connections over the past five years, haha.

So that brings you up to speed on the Boston meeting. I will post a separate blog about my travels.

 

I SAW MILES AND MILES OF TEXAS

June 13th, 2013

And I’ll see more before I’m done. I’ve had that song stuck in my head for days. I’ve driven across Houston, Galveston, Corpus Christi, Laredo and San Antonio, in barely two weeks covering  810 miles while visiting 87 medical facilities. I have had really great responses, especially at many of the major medical facilities with many offering to get the information out to as many physicians as possible. And I’ve been getting a lot of hugs. Love that.

Here is a map of my route up to Houston, Texas. Crazy, right?

GEEZ I'VE COVERED A LOT OF GROUN

GEEZ I’VE COVERED A LOT OF GROUND

It has been an interesting couple of weeks I must say. Before I left the RV for a few weeks in Houston I had encountered a cockroach problem starting in Louisiana. And they grow ‘em big there. My first encounter was opening up my silverware drawer and seeing something disappear across the back and I wasn’t sure if it was a tiny mouse or a giant cockroach. I had a few catsup packets in the drawer and one had been bitten in to so I thought it must have been a mouse. But the next morning I got up and opened another drawer and saw a roach about 2 1/2 inches long scurry away. Gross! Yuck. So  I did my husbands trick of putting down gorilla tape sticky side up along the cabinet where they were coming in plus sprayed, plus put out pellets and only caught a few. Once you see a bug like that in your space it is really freaky. I cracked myself up a few times jumping at nothing. I finally got brave and pulled everything out from under my sink and patched where they most likely were coming in. Must have worked, yeah.

My third night in Houston I pulled into an RV park after the office had closed and was told to pick a spot and check in in the morning. Well, my neighbor came out and asked about ALD and was intrigued with my mission. He was a monthly renter and ended up picking up the tab for my one night there to show his support. Not only that, but his daughter had just graduated nursing school and was specializing in pediatric medicine. She didn’t live nearby so he mailed her a dozen of my brochures as well. How cool is that? I’ve only had someone cover my camping fees once before and that campground was owned by a pastor.

As I made my visits around Galveston I saw a directional sign pointing to the NASA Space Center a couple of times, so decided to check it out. Glad I did. Only spent two hours there but it was really amazing to walk through the museum and inside the training module that was used by the astronauts that have made history over the decades. There was a display showing the history of the space suit, many of the different space capsules and how they evolved and what the actual sleeping compartments look like on the MIR space station.

IMAG0305

THE SPACE SHUTTLE

I went on a virtual ride that simulated a trip on the shuttle including take off, connecting to the Mir Space Station and then landing back on earth. That was crazy. I thought landing in an airplane was spooky. It was very realistic with flames shooting out as we re-entered into the atmosphere. I am really glad I took the time to check it out.

INSIDE THE TRAINING MODULE!

INSIDE THE TRAINING MODULE!

This training module had a dummy spinning as if weightless in the upper left corner which made it feel realistic. I took quite a few pictures but it was pretty dark and my flash didn’t light it up very well.(BTW you can click on the pictures to see a larger view)  I saw moon rocks, the lunar land cruiser and the control consoles.

NOW WE KNOW WHY THEY CALL IT ROCKET SCIENCE, RIGHT?

NOW WE KNOW WHY THEY CALL IT ROCKET SCIENCE, RIGHT?

This picture really doesn’t do it justice because there are control panels on both sides all the way back to where I took this picture. Hats off to our astronauts, past and present. They have big cajones for sure.

That night I camped at Jamaica Beach which is in the Galveston Island State Park. I really liked this area and could totally see myself coming back for a vacation sometime. From there I headed to Corpus Christi with stops all along the way. Never got to see the beaches that are so popular there and forged on to Laredo which was a 152 mile drive. Camped at the Lake Casa Blanca state park which was just outside of town yet felt pretty remote. I would guess that Laredo has doubled in size in the last couple years. I couldn’t believe all the new construction every where. It is the only major city I have been in where the traffic lights were actually in sync. That was cool. Never hit a red light.

Okay so on into San Antonio and this has been one of those cities with so many medical facilities that it has taken me 4 days to get through them all. I was able to encourage the NBC news station here to cover my mission and it should air tomorrow night. I will post a link when it is available.

I’m bummed I never got a chance to visit The Alamo or the Riverwalk while here. Weather didn’t cooperate. I really would have loved to at least go down to the Riverwalk because the very first conference I attended, “The Inagaural Conference for the World Congress on Chromosomal Diseases” was held here in 2004. Fight ALD has come a long way since then. Once l finish up here tomorrow I head to New Braunfels, San Marcos and then Austin.

Now for the really big news!!!! I think most of you know through my posts that I helped form the ALD-AMN Global Alliance which is made up of a dozen ALD and AMN organizations from around the world. We’re talking Spain, France, UK, Australia and U.S. We have been instrumental in providing funding and filing the necessary documents to get newborn screening approved at the federal level and I believe we are getting close. Once we accomplish that we can start implementing it state to state. I was also involved in a meeting with neurologists who specialize in treating ALD/AMN from Boston, Baltimore and Minnesota, who are working on forming an organization called ALD Connect with the purpose of encouraging doctors in other major cities to take this disease on as a specialty and provide a website portal for training while making this information available to our advocacy foundations to pass on to patients. Amidst all of this, the Global Alliance, mainly the Myelin Foundation, has encouraged Bluebird Bio pharmaceuticals to join our efforts. They have funded the gene therapy study in France for ALD boys and are looking to bring that study to the US next year.

So long story short, the ALD  Connect and Blue Bird bio are sponsoring a three day meeting for a member of each of the Global Alliance organizations to attend next week in Boston. I will be flying out of Austin to attend that and I am really excited at how this will help me expand not only Fight ALD and ALD Awareness Across America but also the role I may be able to take on as an advocate for their efforts.

So stay tuned for breaking news, haha. Will post again soon.

YEE HAW, I’M IN TEXAS AGAIN!

May 1st, 2013
WESTWARD BOUND FINALLY!

WESTWARD BOUND FINALLY!

I just had to take a picture of this sign when I saw it. For the first time since starting my mission it is pointing toward home.  Woowoo! I noted on my last post that I was camping in Chattahoochee, wow, try to remember how to spell that without looking it up. It was pretty empty, which made it really peaceful. From there I went through several smaller cities to Pensacola where I had great success. Every one I talked to vowed to become advocates for ALD by getting my literature distributed to their physicians and really took an interest in my efforts. 

MY CUTE LITTLE RV, BIG RED!

MY CUTE LITTLE RV, BIG RED,IN CHATTAHOOCHEE!

My next destination was Mobile, AL and I was surprised to see a cruise ship docked in the murky harbor, and I do mean murky. Pea soup would look better than this did. And who in the world would want to sail to Mobile? Maybe they were trying to escape, haha.

Only one day there but visited 12 facilities, again with great success, and then headed into Pascagoula and Biloxi, (pronounced Biluxi as I was corrected) Mississippi. Some of the facilities have mobile clinics so they asked me for extra brochures to provide to those as well.

THE GULF OF MEXICO IN BILOXI

THE GULF OF MEXICO IN BILOXI

I camped across the street from the beach but my area was not nearly as nice as this one. I decided to get some exercise and went for a 6 mile bike ride along the boardwalk. The first three miles were enjoyable but the return trip was directly into the wind and I had to huff and puff to make it back to my campsite. A little out of shape ya think??? Embarrassing.

After the weekend I headed into Louisiana and visited Slidell where we had a tornado warning that evening but nothing came of it. The following day I was in New Orleans and at my husbands urging I stopped for lunch at the famous Willie Maes fried chicken. Wow, it was delicious. I’ve never seen fried chicken like that before. The breading was really dark and crispy and the chicken juicy and tender. They served it with mashed potatoes with brown gravy and peas. Blew my diet that day. I had planned to check out the night life after getting settled in my campground but it didn’t work out. The shuttle stopped running at 5:00, the city bus ran til 9:00 but because the street car tracks were under construction I would have to do a lot of walking and at night, not so good. There wasn’t any parking to take the RV and cab fare ran $30 each way, so I guess that will be another trip. The next day I was in Metairie driving to a pediatric clinic when an alarm came blaring across my phone that I needed to take cover immediately as there was a tornado warning in effect for the next 45 minutes.  I just happened to be across the street from a hotel so I pulled around back and pulled up as close to a brick wall as I could. I barely got parked when the wind and rain hit. It was pretty freaky.

RAINED LIKE HELL FOR 30 MINUTES

RAINED LIKE HELL FOR 30 MINUTES

The roadways were flooded, trees blown down, even a trampoline was whisked from a parking lot onto the freeway. Lot’s of traffic lights were out too and that was just a mess. It never developed into a full blown tornado but it was still scary. From there I went through Baton Rouge and into Lafayette (pronounced Laugh-a-yet, they talk weird in Louisiana) where I camped for the weekend. My last stop on Friday was at the University Hospital where I was escorted off the property by two uniformed armed officers. The woman I talked to in administration was a b-tch and refused to take my brochures. When I asked her to speak with someone else who was a decision maker she had me wait in the hall as if she were calling someone to help me. NOT! How she can make a decision like that is beyond me, but que sara sara. Next.Since I got finished a little early I decided to check out the Tobasco Factory and Jungle Garden on Avery Island I had read about in my camping brochure. That was a nice little segue after my disturbing encounter.TOBASCO FACTORYThe tour itself was kind of lame but the video we watched told the history of how it all got started which was really cool. They had a couple of tobasco sauces I have never heard of in the company store, which I purchased. One is an Asian Tobasco and the other a raspberry chipotle tobasco. They had samples of all their sauces as well as jalapeno and raspberry chipotle ice cream. Those were a little weird.

THE JUNGLE GARDEN

THE JUNGLE GARDEN

From there I went to the Jungle Garden which is a drive through Oak forest with places to pull over and hike around. The giant oaks were covered with Spanish Moss like I had seen in Savannah, GA last year. Really breath taking. There were several gardens along the way and an egret sanctuary in the middle of a bayou called Bird City. I climbed the observation tower and took this picture. There were two beautiful pink birds flying around which another observe claimed to be spoon billed something or others. 

BIRD CITY

BIRD CITY

My weekend consisted of printing and folding brochures since I had run out of the 5500 I started with. Incredible. But, when I changed my ink cartridge the printer went on the fritz so had to take it in to Office Depot yesterday to find out if it was the printer or the cartridge since I had the problem with 3 cartridges. It was the cartridges, thankfully, since my 2 year extended warranty had expired the week before (of course). Because I was having the problem with the printer and the amount I would need to print to go through Houston I decided to cut my trip two days short and start in Houston when I fly back out on May 28th. My printer at home is so much faster and I have a paper folder so don’t have to fold by hand.I have visited 170 or so facilities across 5 states in the last 4 weeks and I am pooped. That’s a lot of miles. I was in Lake Charles and Beaumont, TX Monday and Tuesday and will be in Baytown and Pasadena today and fly out of Houston tomorrow. So I leave you with this last photo of the serene sunset over the lake at my campground in Laughayette! KOA sunset

DON’T YOU TELL ME NO!

April 16th, 2013

Bit of a rough start this year. I flew in to Tampa on Sunday April 4th, late and took the shuttle to my hotel. It was too late to get the RV out of storage so I had planned to stay at the Best Western Bay Harbor hotel so I would have a straight shot across the bay to Clearwater to pick up the RV the next day and take it in for service before embarking on the next 4 weeks of travel. As we pulled into the parking lot I noticed a sign for Hogan’s Beach Bar (as in Hulk Hogan) and there were 4 police cars parked out front. The shuttle driver informed me it had gotten quite rowdy as usual but it seemed to be under control. I got checked in and had a rough time getting to sleep with the noisy AC, but managed to catch a few ZZZ’s before the beach bar started blaring music by the pool at 7:00 AM, 4:00 AM my time. Ugh! Not a great way to start the trip.

I called a taxi to take me to the RV and the meter was up to $5.00 before we even got out of the parking lot. Argh! $30 ride to the RV and both batteries were dead. Thank goodness for AAA. They dispatched pretty quickly and he was able to jump me and I took it right to Halverson’s RV service where I had an appt. to get the oil changed, all fuel levels checked and a good once over before hitting the road. The AAA guy told me that my battery needed to be replaced since it was nearly 5 years old so I figured I would just add that to the service list at Halverson’s. I mean, a battery, what could that entail? Well they charged me $134, for the battery that I later realized I could have bought at Costco for $79 and also charged me for a half hour of labor to install it at $55.00, $24 to top off the anti-freeze,  and $134 for the oil change. Total rip off. They pointed out that I needed to replace the front tires and I agreed since they had over 25,000 miles on them by now. Fortunately for me they didn’t do tires. I lucked out and found a used tire joint the next day and got two for $165 installed. That was a great deal since they cost $150 each new. It took them the whole afternoon so I didn’t get much else done.

Tuesday I still had to clean the RV in and out, unpack and stock up on vittles so that put me a day behind. Found mouse poop and pee in several places including silverware drawer so that took some extra cleaning. By Wed. I was all packed up and ready to start my visits, but no, wasn’t going to happen without another hitch. About 15 minutes into  my drive to Tampa I noticed a weird sound and my dash showed that I was starting to over heat so I immedidately pulled off the road and popped the hood and sure enough water and steam where belching out from somewhere behind the radiator. Once again, called AAA but this time it took longer because they had to send a truck big enough to tow me. By the time the driver arrived the RV had cooled down enough for me to reach under the bypass radiator hose and feel that it had completely blown out. Too bad Halverson’s didn’t check my hoses when they topped off my antifreeze. Gee I wonder if that’s why I needed any in the first place.

The tow truck driver told me he would have to drop the drive train to prevent burning up my transmission and that took a while to accomplish. By the time I was towed, had the hose replaced and thermostat checked it was nearly 2:00. I was beginning to stress out about being 2 days behind at this point and debated whether to just skip the last few stops I had in Tampa since I had already been to most of my major stops last year. But, there was one thing I was determined to do. Last year I had dropped off a stack of brochures at the corporate headquarters for Healthpointe who operate 7 pediatric and 5 family practice offices. No one was in the office so I left a note explaining that I would like them to distribute them to their doctors for me. So many people don’t read the line that says “These are for your providers” and that apparently happened as they mailed them back to me with a note stating they don’t distribute marketing information. Argh. So I drove back over there hoping to speak directly with someone but was met at the door by security. He wouldn’t even let me go past the entrance. After trying to convince him with no luck I started to walk back to the RV when it struck me to at least ask him for a name and a phone number so I could call. Instead, he escorted me to the office and introduced me to the administrator who it turns out, was more than happy to help me out. Now that was a great turn around and uplifting way to get started after all the glitches. Like I said, dont’ you tell me no!

The rest of the week went extremely well and I was nearly caught up by the end of week.  By Monday, I was feeling like a rock star. At my last stop in Tallahassee I got to speak with one of the doctors who deals with ADD patients. He was familiar with ALD but was interested in talking to me about it. Turns out he is going to be teaching interns and now he is determined to educate them about ALD as well. Score! This morning I head toward Pensacola and hope it goes as well there.

The weather has been hot and muggy with rain off and on as usual and we already had a tornado warning over the weekend, but the nights have been quite pleasant. I didn’t do anything exciting over the weekend except get caught up on sleep, do laundry and watch tv. The campground I stayed at had just the basics, no pool, no entertainment, not close to anything either, so I just hibernated inside. Last night I stayed in Chattahooche which is quite pretty. I will take some pictures and post on my next blog. Ciao!

AND I’M OFF TO THE EAST COAST AGAIN!

March 19th, 2013
TROPICAL STORM ISAAC, DOWNGRADED FROM A HURRICANE!

I guess I forgot to update my blog when I got done traveling last year. I was pretty worn out and with the holidays quickly approaching it evidently was not a priority. Sorry.

To give a quick up-date, I finished up the year in Tampa, Florida but not before weathering a lot more storms including Tropical Storm Isaac that came ashore while I was in Miami. I was camping when an emergency vehicle came through the park blaring an evacuation warning. It was about 9:00 PM and I wasn’t thrilled at the prospect of having to pack up and relocate. Turned out they said I should be safe overnight but that the brunt of it would be coming the next day. I got up and out early and holed up in a hotel for the remainder of the weekend and Monday. It rained something like 13 inches and blew a gale. You can kind of see the RV in far left parking lot and I had a view of it from my window, so was able to keep an eye on it. I’m not sure what I would have done had it looked to be in danger, but I felt better just being able to see it. Fortunately, there was not a lot of damage like I had seen the year before when Irene came through Massachusetts.

HOME TO SOME OF THE NICEST BEACHES ON THE EAST COAST

The no-see-ums and mosquitos were awful everywhere. I have always been a magnet but this was out of control. Sure took the enjoyment out of camping, for sure. Florida had a nice chain of beaches that had access down wooden sidewalks through some heavily shrubbed landscaping. Once on the sand there were wooden adirondack chairs and umbrellas avaiable for the publics use, which I thought was really cool. Wish we had something like that here in San Diego so we don’t have to haul all our gear everytime since parking is not that conveniently located. One beach I went to should have been called Shell Beach. I don’t know, maybe it was, but it was so beautiful I took a photo of it. I still prefer the beaches out here because we don’t have the insects or the humidity.

SHELL COVERED SAND AT THE BEACH!

I had planned to make it all the way to Tallahassee and fly home from there but once I checked out airfare it made a lot more sense budget wise to end the trip a little earlier and fly out of Tampa. I was able to store the RV at the last campground I stayed at which will be convenient for when I fly back out, which will be in just a couple of weeks on April 7th. I dec ided to wait until after Easter this year.

I have a full four week schedule with stops across Florida, Alabama, Mississippi, Louisiana and Texas. The plan is to fly home from Houston after traveling nearly 1500 miles and adding another 190 facilities to my list of 2500 so far. I have put on a little over 30,000 miles on the RV so far and am keeping my fingers crossed that this will be an uneventful year repair wise and that I can get it back home by mid-summer. The ALD-AMN Global Alliance that I helped form and has 12 organizations from around the world involved is still diligently working on getting newborn screening available as well as helping to fund a research team at the University of Minnesota. I will be attending a meeting tomorrow with a group of doctors who are forming a medical network called ALD Connect. Their primary function will be to help the Global Alliance better advocate for affected families as well as help direct them to medical professionals who specialize in treating both ALD and AMN. I will know more after the meeting and will post it either here or on my website later.Well, wish me luck and let me know I am going to be in your neck of the woods. I always enjoy meeting the families that have supported my efforts. Cheers! Janis

WOOHOO – STATE NUMERO 48!

July 22nd, 2012
 
Virginia Beach
Spanish Moss draped trees in Georgia.

This year has been so busy on and off the road I haven’t had very many opportunities to update my blog. But I will back track and bring you up to speed now. As I mentioned in my last post, I hosted my father’s 87th birthday party when I got home in May after spending time in Maryland and Virginia. We had about 35 people come for the event including our close friends, my brother and sister in-law from Phoenix, friends from our old neighborhood in Scottsdale, AZ along with some members of the jazz band my dad used to direct at San Diego City college. Fun was had by all and Bill put out a pretty amazing spread of BBQ, as usual. I spent the rest of my time charting out my route and printing and folding brochures and flew back to Raleigh/Durham on June 4th.

The next leg of my trip took me back through North and South Carolina, Georgia and then into Jacksonville, Fl. The weather was still being uncooperative and it rained a lot, which really added to the humidity. Sometimes it just felt plain unbearable. It can make a person pretty grouchy… I am not naming names. I really liked Savannah, GA and wished I had arranged to be there over the weekend. I would have enjoyed spending some time checking out the area.

My little buddy!

I made a friend at the campground, a chubby little squirrel who loved blueberries and watermelon. He was pretty bold and visited me daily while I was there.

The RV needed some work so I left it at a garage while I flew home to spend the 4th of July and my birthday with my family for the first time since I started traveling. I did manage to take a few days off but spent the majority of the time mapping out my next leg through Florida and preparing brochures. I was hoping that since there are so many Children’s Hospitals, 15, that most of the pediatricians would be affiliated and I wouldn’t have many other facilities to go through, but that isn’t the case. This leg will take me to 185 facilites between Jacksonville and Miami so it will take another 3 or 4 weeks to complete Florida on my next leg. Once done though, I will be heading westbound toward home. I listed all the cities across AL, MS, LA, TX and AZ I still need to visit and it became pretty evident that I’ll not be able to complete the journey this year after all, unfortunately. But I am beginning to see light at the end of the tunnel.

ANOTHER RAINY WEEKEND!

Before heaading back to Florida I flew to Chicago to attend the United Leukodystrophy Foundations 30th Anniversary conference, my ninth year in attendance. Doctors from around the world presented information about therapies, research and advances in all areas of ALD and AMN as well as other leukodystrophy’s. It was very informative and pleasant to see familiar faces as well as meet new attendees. I spent some time with the Strenges whose son was diagnosed with Addison’s disease and consequently with ALD at age 17, but is not symptomatic and is heading off to college in the fall. They are from Florida so I will be visiting with them again later this week when I am in W. Palm Beach.

I flew from Chicago back to Jacksonville on July 15th and then picked up the RV and drove 60 miles to my campsite in St. Augustine Beach. That was a long travel day and I was wishing I had scheduled a day off for myself before getting right back after it, but it didn’t occur to me to do that in advance. This past week, however, went really well and I feel like I really saturated the area and made a lot of advocates along the way.  I hope it continues to go as well over the next couple of weeks. I am camping this weekend in Fort Pierce and you can see by the picture on the left what the weather looks like. RAIN! Glad I decided not to hang out at the beach.

I will fly home again on August 4th so I can be home for the Stone Brewery’s 16th Anniversary Beer Festival for which I help staff with my volunteers in exchange for a donation from the proceeds of the event. They have been very instrumental in my fundraising since the beginning of Fight ALD and they also support the Surfrider Foundation, San Marcos Boys and Girls Club and the Palomar YMCA. The event is always a lot of fun and I am sure it will be every bit as successful as their past anniversary festivals. I will aspire to post again before then, but don’t hold your breath, LOL.

FOURTH AND FINAL YEAR, I’M HOPING!

April 29th, 2012
 
LADY LIBERTY

 

 

BRYANT PARK, NY (where fashion week is held)

Another year, and I am back on the road. I apologize for not updating my blog before now, but my last leg of last year wiped me out so much that I just had to completely distance myself when I got home. I went through N.Y. city and surrounding suburbs and through New Jersey in September before putting the RV in storage for the winter. Talk about crazy drivers. I’ve never experienced such a thing. One went racing around me in the Bronx passing on a double yellow line into the oncoming traffic and when the car jumped in front of me there was a sign on the back that read “Student Driver.” That was laugh out loud funny to me. No wonder they all drive like maniacs, that is how they teach their teens to drive.

I did see a few sights along the way. The Statue of Liberty, Empire State Building, Central Park, Times Square and even caught Mary Poppins off Broadway. However, just walking in New York is hazardous. If the taxis aren’t mowing you down, the pedestrians are. Maybe it would have been a different experience if I was with someone, but the way I feel is “Been there, done that.” No need to repeat, ever.

TIMES SQUARE

A lot happened during my break, what with the holidays and such, but also my father was diagnosed with colon cancer. I went up north and stayed with my mom while he went through surgery and I am happy to report that he doing very well. I will be hosting his 87th birthday party at my house during my break in the latter part of May.

This year’s mission has started off pretty good, if you don’t count the poor work that was done on the RV at Stone’s Camping World over the winter or that American Airlines refused to waive the baggage fees on the two cases of brochures I brought with me, like all the other airlines have. No, they charged me $210 bucks for them and one suitcase. Needless to say, I won’t fly American again. They said if I had put Fight ALD in my record then they could. It didn’t matter that I am standing there with my business card, copy of the brochures, living proof that I am on a humanitarian mission. That is such BS.   And on to of that we are having an extreme cold snap in this part of the country right now. I was in Philadelphia when it snowed in Pittsburgh. So far I have yet to see temperatures over 65 and more like low 40′s for most of the time.

 

LORRAINE AND ME AT JONAS SALK MIDDLE SCHOOL

I began the trip with a visit to Jonas Salk middle school in Old Bridge, NJ on April 19th where I was invited to give a presentation about ALD to a science class of eighth graders. They had watched Lorenzo’s oil in their class last year and part of their curriculum is a requirement to take part in 2 service learning projects this year and they chose Fight ALD for one of them. Their teacher, Lorraine Wehrle, went to great trouble to provide me with a comfortable setting where I could interact with about 125 students. It was a great experience and I was quite impressed with the cooperation and enthusiasm of the students. 

SOME OF THE KIDS CHECKING OUT MY MAP

 From there I headed in to Philly and suburbs and actually made it on the evening news on NBC in Lancaster. I have to order a cd of the broadcast and then will post it on here when I get it. I did Delaware in a day, both Wilmington and Dover and am now in Maryland. That added two more states to my collection and now the only contingous state I have yet to be in is Florida. On the other hand I will be going back through quite a few states that I have already been in, but in cities I’ve yet to visit. So with that said, I am hoping to wrap it up this year and get the RV back to California. I do have the weather on my side later in the year as I go through the gulf states, so I am counting on being able to do an extra leg in order to accomplish that.

Tomorrow I am heading into Baltimore and have been invited to visit Ann Moser at Kennedy Krieger Institute and I am looking forward to seeing her and some of the other doctors and researchers I have gotten to know over the years. I mailed NBC in Baltimore to let them know I am coming so maybe they will do a story on my mission as well. Oh, and I forgot to mention that I stopped at a Walmart a few days ago and People magazine had a Glamour shots booth set up. I figured it couldn’t hurt to see if there was an editor around and although there wasn’t one there, one of the employees was very happy to take my information and hand deliver it to the editor she works with. Who knows, maybe they will contact me while I am in Virginia. I think they are based out of Newport News where I will be  May 11th. Keep your fingers crossed.
After Baltimore I will stay in Maryland through Wednesday and then into the D.C. area Thursday before heading back in to Virginia for most of the remainder of this leg before flying home from Raleigh, N.C. on May 18th. I am hoping the weather doesn’t change drastically and become a furnace overnight. Talk about whacky weather, it poured here all night long last night and continues to have sporadic downpours although this is what the sky right above me looks like. Weird indeed.
 
NOT A CLOUD IN THE SKY!

GOODNIGHT IRENE!

September 5th, 2011
 
CAMPGROUND ON THE WATER, MOSQUITO’S LOVE WATER! :-(

Wow so much has happened since my last post. (Warning…this is a long one)

Hmmm, let’s see, I was about to spend the 4th of July and my birthday in Saratoga Springs. I was in a very nice campground if you don’t count the humidity and the hoards of mosquitos. I think my OFF spray worked more like a magnet than a repellant and those little buggers timing was impecable. Just about the time my coals were hot enough to cook my dinner I’d be eaten alive and would give up and head inside. Unfortunately, there were hitch hikers that came in on my clothes. One night I was so fed up I sprayed down my whole bed and slept with just my eyes and forehead uncovered and when I got up the next morning I had so many bites my right eye was nearly swollen shut.  I looked like I’d taken a sucker punch. I got a lot of the swelling to go down with ice but I still looked pretty scary. I’m sure I freaked a few administrators and receptionists out, haha.

I drove on into Vermont and  continued to get eaten alive by squeeters, but keeping the eye on the prize forged on and had some great experiences at medical facilities there, New Hampshire and Maine. I camped near Old Orchard Beach in Maine over the weekend and since I’d never seen the east coast before took the trolley down to the boardwalk/pier. Quite different than the west coast although the sand looked the same. But way more people on a much smaller beach and the pier was lined with shops and restaurants so you couldn’t even see the ocean. I took some pictures but had to replace my phone when I was home recently and don’t have access to them, dang. I ended up walking down the beach to a restaurant that had a deck on the sand and…fresh Maine lobster. Elvis even showed up and danced for the crowd. I think he was an escapee from a nursing home with a really bad wig.

Trying to figure out where to store the RV while I flew home from Boston was not looking so good until I did a search for park, stay and fly and found a Red Roof Inn that not only had that program but also room to park the RV. After I told the manager about my mission he waved the $5/day fee for the additional time I needed to leave the RV there. Totally cool. I also got two checks in the mail when I got home from medical administrators that I met while in the New England area the last week I was on the road. And two complete strangers, one at a grocery store and one at a campground asked me about ALD and each stuffed a $50 bill in my hand to help with gas. Also totally cool.

I flew out of Boston to Illinois and attended the ULF (United Leukodystrophy Foundation) conference for my 7th year. They had recently covered my mission in their quarterly newsletter and it was great to have that acknowledgement. It was also great to hear from the ALD specialists from around the world about the research advances and possible new therapies and visit with the doctors and families I’ve come to call friends over the years. One of the doctors who was so instrumental in helping me after Sawyer’s diagnosis, Dr. Charlie Peters, was there after a two year hiatus. He is a pediatric oncologist who specializes in bone marrow transplant for boys with ALD. His jaw dropped when he saw me after learning about my mission and after we spent some time talking, invited me to co-author an article for publication in the Journal of Pediatrics with the hope that we can elevate it to CME (continuing medical education) level. I sure hope that comes to fruition.  I am sad to say that since the conference the ULF has lost two key players. Janet Reed, a board member and Ron Brazeal, co-founder and Executive Director. They will both be missed.

From there I flew home and after only one day of rest drove up to Gina Cousineau’s home in San Clemente, the founder of BAHBAD, the  Be A Hero, Be A Donor foundation, inspired by the loss of her son Evan to ALD after transplant, for the first collobarative meeting of 7 other ALD organizations from around the world. Quite an honor to be involved and we are now forming the ALD AMN Global Alliance so that we can have a louder voice, a more focused unity for raising funds for research and of course, where I come in, awareness. The organizations are BAHBAD, Fight ALD, the Myelin Foundation (founded by Lorenzo’s dad) and Cure ALD all from California plus Stop ALD, ALD Life from the UK, and the Australian Leukodsystrophy Support group. An honor indeed to be associated with these organizations.

That was a two day event and the following weekend I had a Fight ALD booth at the grand opening of the Green Flash’s new brewery in Mira Mesa. They are one of my major fund raisers through their anniversary beer festival events and it was great to see their new facility. I am excited for their first anniversary festival coming up in November. More info to be posted as it comes available.

Stone Brewery, my biggest supporter and brewer of Sawyer’s Triple and my husbands employer also raise money through their annual anniversary celebration. Their 15th anniversary was celebrated on August 19th and 20th, a two day event this year. I volunteered to pour beer on the 19th and geez those fans kept me so busy I could hardly come up for air. For the main event I had my ALD Awareness booth and brought volunteers to pour beer. It was awesome, as usual, and I anticipate was quite successful. It totally wore me out and I was not looking forward to having to wrap up all my last minute details Sunday before flying out on Monday, but managed to get everything accomplished.

Lots of work goes into each and every one of my trips and planning this one was one of the most difficult. I was feeling a lot of apprenhension about even attempting to go to the major cities in the New England area, Boston, New Jersey, New York, etc. and now that I was here for Irene, can’t help but wonder if my intuition was trying to tell me something. More about that later.

See, I told you this was gonna be a long one. I flew back to Boston on  Monday, August 22nd and got right back at it on Tuesday. Most of my visits over that first week were quite successful. I even got invited back to talk to docs and nurses at one of the Urgent Care facilities. All of them had heard or seen the Lorenzo’s oil movie, but none of them actually knew anything about ALD. So sad, but again that’s why I am out here doing this. At least they are educated now. That happens now and then and every time I am alarmed to see the surpirse in their faces when I tell them the statistics. Still wish I could elevate this to a larger scale through the media. You’d think now that I have been to something like 2000 facilities across 45 states they would take an interest. I’ve tried to get the associated press to cover the mission, but no luck. That won’t keep me from trying, however.

Parking in downtown Boston was impossible so I ended up having to abort the 5 stops I had scheduled there and start focusing on getting out of the path of the hurricane, if at all possible. Also impossible was camping. The one place I did find was so remote they only had water, no other utilities and I don’t have a generator. I really need electricity to stay connected to the world via my phone and computer and also for primping in the mornings so I don’t look too wild on my rounds. By the weekend all the campgrounds had been closed because of the storm, anyway. Not sure what to do or where to head I just continued on my rounds for the remainder of the week and stayed in hotels and kept the news on round the clock. I got a room in Brockton Friday night and had planned to get up and drive west to get away from the coast but as the path of Irene was updated realized the eye of the storm was expected to go further ashore and reak havoc on the exact area I had planned to go to. I lucked out that Brockton ended up being probably the best location I could have been in. It sat up on a berm so no chance of flooding and by the time Irene hit, had been downgraded to a tropical storm and the winds never really got over 76 mph. It was still pretty scary I have to admit.

REDRUM, REDRUM!

I stepped out front to buy a Sunday newspaper when I heard three loud booms and then the electricity went out. The wind had blown some trees over on the power lines and the transformer blew. I had thought ahead and bought stuff for sandwiches, water and wine and packed a cooler to keep in my room. I also had a flashlight and a candle so I was a little better off than some of the other guests.  But after holing up in my room all afternoon I stepped out to this scene right out of The Shining. Talk about creepy. It was so quiet I thought everybody had left and I was the only one left until I walked down to the lobby. This is what the storm looked like from the back door of the hotel. http://youtu.be/HZDf7qnFKqo

By Monday I was still in the dark and knew I needed to give all the businesses at least one day to get up and running before I started my rounds again. I located a KOA campground that was somewhat near my next destination, E. Providence, RI that was open for business and decided to head there. I became quite emotional seeing the damage from the storm.

AHAH! PERHAPS THIS COULD BE THE PROBLEM?

 This was just a couple blocks from the hotel. I’m not sure what the fake goose is doing out there, but you can see the tree in the middle of the street and downed wires all along the sidewalk and crossing the street. All I could think was I hope nobody got injured. On my way to the KOA I passed a sign that said Cape Cod 31 miles which wasn’t a lot further then where I was heading and since I had the afternoon free decided to go check it out. A lot of businesses were still boarded up but I managed to find a restaurant to have traditional fish and chips and a campground in Plymouth that had electricity.

 

 

 

 

I saw quite a few more downed trees and the campsite was pretty messy.

 

 

 

Tuesday night I found a campground that claimed on their website they did not sustain damage and were still open so I headed there. When I arrived at 4:30 there was an OPEN banner waving out front but the office was clearly not openand there were only a handful of campers. I called the number I had for them and left a message. I hung out for a while but noone ever called back or showed up so hit the road for another campground down the road. Well it would have been down the road had my GPS taken me to the right address. It too was closed and after calling a couple more with no luck decided to head to a hotel. It was now after 7:00 and I was getting pretty tired of driving around. I stopped at a Comfort Inn only to find out they didn’t have a vacancy. So I drove down the street to a Quality Inn, also booked. Now I started getting a little nervous that I wouldn’t be able to find a place to stay with all the power outages across the area so pulled over and did a search on Travelocity. The only room coming up showing availablitily was a Fairfield Inn in Milford, CT still a bit of a drive so I booked it online just to be in sure. It was a beautiful suite and was $138, alot more than I wanted to pay, but I felt like my hands were tied. So far every hotel I’ve stayed at has given me discounts because of my mission but since I booked this room on line, I didn’t even ask. However, I told the front desk clerk about my mission and left a brochure with him and when my bill was stuck under the door the next morning discovered he gave me the room for $98.

After Providence I headed back into Massachusetts and observed such devastation from what I found out was a tornado they had on July 1st and then getting hit with Irene. This is where I was originally heading to get out of the storm so I was really relieved I changed course when I saw this.

Now they are expecting more torential rains and flooding. I just saw pictures of the damage in New Haven on the news which has been declared a state of emergency by FEMA. I will be in New Haven on Wednesday. Totally unpredicatable weather patterns this entire year, every where. I hope next year will be kinder to me and everybody else, for that matter. I’m spending my holiday weekend here in East Hampton where we were withouth power all Friday and Saturday, and part of Sunday and am glad to finally be able to get my post completed.

I’ll update again before I head home at the end of the month.

HERE ARE THE PHOTOS!

July 3rd, 2011
THESE ARE THE RAPIDS LEADING UP TO THE FALLS. SOME ARE 5 FEET HIGH. IF YOU GOT STUCK IN A BOAT YOU’D HAVE 3 SECONDS TO GET TO SAFETY BEFORE BEING SWEPT OVER THEM.

VIEW OF NIAGARA CITY THROUGH RAINY WINDOW AS I DROVE INTO THE FALLS.

JUST AN AMAZING AMOUNT OF WATER FLOWING THROUGH HERE.
 

A BIRDS EYE VIEW. SO COOL.

THIS IS THE OBSERVATION DECK IN THE BACKGROUND AND WAS TAKEN FROM THE CAVE OF THE WINDS WHERE YOU GET UP CLOSE AND PERSONAL AND REALLY WET.

 

ABSOLUTELY SPECTACULAR! TAKEN FROM OBSERVATION DECK.

 

THIS WAS MY FIRST LOOK AT THE FALLS UPON MY ARRIVAL.
FROM THE OBSERVATION DECK.
CHECK OUT THIS COOL MOTORCYCLE TENT.
I HAVE NO IDEA WHAT THIS IS BUT IT’S KIND OF COOL.
MY RV LOOKS LIKE THE RUNT OF THE LITTER, HAHA!
CAMPGROUND OUTSIDE OF SCHENECTADY. VERY PRETTY!
CAMPSITE FOR THE 4TH OF JULY, SARATOGA SPRINGS
  
 

NOW IN NEW YORK!

July 3rd, 2011
 
VIEW OF CANADA FROM ERIE

After my last post I went to Youngstown, Ohio which was kind of a bust. They closed their Children’s Hospital a couple years ago which I didn’t discover until I got there. I was still working off of my original list of 215 Children’s Hospitals that I printed up before I started this mission. I now have an online data base to cross reference with so that doesn’t happen again. After Youngstown I went back in to Pennsylvania where I spent time in Meadville and Erie where I made  a brief side trip to take a peak at Lake Erie where I could see Canada on the other side.

WHAT A MOMENTOUS OCCASION THIS WAS!

 From Erie I crossed into New York and just seeing this sign was both and exciting. It is hard to believe I have actually made it this far. I am really enjoying New York state so far. Buffalo was a neat city and when I realized that one of my camping options was at the Niagara KOA I rearranged my schedule a bit so that I could take a side trip to the falls for a couple hours the following morning. I am so glad I did. Even though it rained the entire time, which makes some of the pictures a little hard to make out, it was spectacular. I guess the rain kept a lot of people away so the park was not busy at all and it was easy to get around. I’m having a hard time inserting photos so added a second page to my blog with the photo montage so be sure to check that out. Got some pretty spectacular pictures despite the crappy weather.

Anyhow, from there I headed into Rochester and Syracuse. Upstate New York is very beautiful and I have enjoyed my drives inbetween destinations and campgrounds. Schenectady, Albany and Troy were great successes and at one Urgent Care I stopped at I was able to engage 4 nurses and a doctor in conversation about ALD. They were quite impressed with the information since they barely knew anything about ALD or AMN. During my visit they looked up contact information for one of their local news stations for me which turned out to be a sister station of News14 out of Charlotte. When I called they said they would check out my information and the other story and get back to me and since I hear that alot, wasn’t holding my breath. But, lo and behold, I got a call back later that afternoon with an invitation to come to the studio for an interview the following morning.  Here is the link. http://capitalregion.ynn.com/content/548684/woman-on-a-mission-to-raise-awareness-about-ald/

This was my first in studio interview and I pretty much nailed it, haha, although I look a little nervous. So now I am camped just outside of Saratoga Springs for the holiday. It rained much of last night and off and on all day today so should be nice and steamy tomorrow when the sun comes back out. I originally was going to meet up with a friend in Woodstock for the weekend but she ended up having to go out of town for business. I had added Kingston to my original itinerary since I would be passing through there enroute to her place, but because of the change deleted those stops and am now going to make it all the way to Maine and then Boston where I will fly out to attend the United Leukodystrophy Foundation’s conference before heading home for a while. BTW, mark your calendars for Stone Breweries Anniversary celebration for charity on August 20th. I need volunteers so if you are available, send me an e-mail at janis@fightald.org and I’ll put you on my roster.

I hope you all have a very nice 4th of July.