Jim Filanc’s DiaryToday was a day of remembrance and celebration. There were no rallies planned. So Ophie and I toured the remnants of Hurricane Katrina to remind everyone not to forget. People were busy putting their lives back together, struggling to find normalcy. We took a needed rest by visiting the French Quarter to eat lunch. The aftermath of Mardi Gras was everywhere. Live music everywhere. The smell of food, wine and week-old garbage. What a mixture. The people of the French Quarter showed resiliency. Reconstruction and hope were everywhere. Check out "The Julia Lynn." I rode her through the French
Quarter down Bourbon Waveland was our next stop. Our good friends at ENDS, LLC. of Gonzales,
Rebuilding is just beginning. America, DON'T FORGET! Friday started out with Ophie and me finally getting a chance to sleep in—7 a.m.! Today's stops included Houston, Texas and Baton Rouge, Louisiana. On the road by 7:45 a.m., we left Austin, only to head down the wrong
way on I35. After turning around in rush hour traffic (15 minutes gone
by), we headed east We arrived in Houston about 15 minutes early to be greeted by Rose Territo,
our The Houston Scleroderma family and friends were really wonderful. We
were The time with the Baton Rouge Support Group was very enjoyable, as we visited with them and enjoyed a meal at the restaurant where we rallied. As we have at the other stops, we spoke about the disease, showed off the Julia Lynn and helped make people a little more aware of this disease. Please look at the photos from this visit as Joe Anselmo tried to become a motocross rider! Thursday began with Ophie and me getting much needed rest. We got up at 7 a.m., getting on the road in Midland, Texas with a cup of coffee and a pastry. Just guessing what route we should take from Midland to their next destination, Austin, almost proved to be a real embarrassment (we'll talk about that in a moment). Down the road at the first gas stop, I noticed a huge puddle of gas under the Nitro Tire van. Not seeing any real gas leakage, I took a chance to press on to Austin. Gas mileage plummeted to seven miles to the gallon. Hmmm . . . was I losing gas on the road . . . or what? Further down the road, I had a strange feeling we were traveling the long route to Austin. We pulled into a gas station just outside Abilene on I-20. I asked directions, only to find out we were about two miles from US 84 East, the main cross-country route to Austin. Had we not stopped, we would have been two hours late. A real embarrassment avoided by divine intervention. As it turned out we were one minute early (per our watch). Whew!!! Traveling through the heart of Texas, we came across minor excitement with a three-alarm fire in a farm field diverting traffic. We arrived in Austin to a lot of traffic, but found our way down town. We had a parking place coned off just for us courtesy of City Hall. We thought we were in luck, what with three TV station camera crews surrounding us. Dagnabbit. They were there for a council meeting. (Apparently the fireworks were elsewhere today.) It was pretty exciting with the Austin Scleroderma Foundation getting to meet Natalie and Whitney from the Lance Armstrong Foundation. The group shared their common charity experiences and how they deal with their condition on a daily basis. At the end of the event, Jim jumped on "The Julia Lynn" and drove around the block, letting a pinch of Susie's hair fly into the wind in front of City Hall. Everyone said their goodbyes with a great time had by all. Next stop—HOUSTON! Day Three on the Tour had Ophie and me up bright and early as we had
to travel more than 340 miles before the 1 p.m. rally. We were up late
last night updating We were pleasantly surprised to find Councilman Ortega in attendance. He presented a letter on behalf of the El Paso Mayor John F. Cook to the Racing For Life Team. We thanked him on behalf of the El Paso Chapter of the Scleroderma Foundation who made this event possible. The media showed up helping us reach a broader audience. El Diario covered the event in newsprint while KFOX Channel 8 covered the event for television. Later that evening we had the opportunity to be interviewed by ABC KMID Channel 10 of Midland, Texas and NBC NewsWest Channel 9, also of Midland, Texas. Both interviews ran on the 10 p.m. news. Jim released a pinch of Susie Avila's hair while riding "The Julia Lynn" at both interviews to commemorate Susie's life. Yesterday we hit the road. We got up bright and early, hitting the road at 4:15 a.m. from Temecula. We hit a major rainstorm leaving town, dumping more than an inch in the first hour. We made it through and everyone is safe. We posted to the website (www.racingforlife.org) last night, creating a new page for the day's travels. I am still gathering names of those we met and photo captions should be updated tonight. We arrived in Phoenix just after 12 noon and met two close friends for lunch at the Claim Jumper on the outskirts of town. Tim and Peggy Cartier were our neighbors for several years back in the 1980's. Peggy is a breast cancer survivor, having survived two rounds of chemotherapy. She appears to have beaten the disease so far. My brother Peter was going to meet us but was feeling the after effects from his chemotherapy treatment last Friday for bladder cancer that has spread throughout his body. Peter is an avid golfer and was fortunate to play Pebble Beach last week, shooting a 92! We arrived in Tucson at 3:15, exiting Ina Road. We encountered a slow moving freight train blocking the road, taking 15 minutes. After being stopped by street signals at every stop for four miles, we arrived with five minutes to spare. The Scleroderma Foundation’s Tucson Support Group turned out in force! We were greeted by Pat Gould and Mattie Heenan and about a half dozen other folk. The store manager, Mr. Ken Vowles met us in the Wal-Mart lot and was gracious in letting set up next to the entrance of the store. About 15 people showed up for the rally at first. Passersby also stopped where we handed out literature for the Lance Armstrong Foundation and Scleroderma Foundation. I'm really impressed with Pat's organization. She had everything ready, including a tremendous amount of literature about scleroderma. I learned a great deal today about the various ways scleroderma attacks the body. A particularly touching moment occurred when Teresa Wegner shared the story of her daughter, Anna Maria. Anna is 14 and has been diagnosed for two years. We were given a picture of her then and present. She is a beautiful young girl whose progressive systemic scleroderma has diffused to about 35 percent of her body joints. As kids will be, she has suffered from taunting, adding stress to her life. I am going to scan a picture of Anna for later posting at Teresa's request. We spread a pinch of Susie Avila's hair today at the rally. A photo of the moment was posted last night. When I reach the Atlantic Ocean, Ophie and I are going to gather a vial of Atlantic Ocean Sea Water and place a pinch of hair in it. When we return we are going to reach the Pacific Ocean and place a pinch of hair in that vial of ocean water. These two vials of water will then be presented to Albert, Susie's brother as a memento of Susie's ride across the country on "The Julia Lynn." I proudly wear the mojo bag with Susie's hair in it. You will see the bag in all the photos. She will have traveled more than 5,000 miles, fulfilling her wish to ride aboard a motorcycle in the process. Susie and Julia Lynn will be forever joined in our memories! The scleroderma survivors all got a chance to tell their stories. Ophie and I learned so much hearing about how scleroderma works and some of the more innovative treatments, including the use of Cialis. Yes Cialis! Somehow it affects the blood vessels of the affected tissue, dramatically alleviating symptoms and pain, restoring mobility in many cases. By the way we learned on Monday that the mother of Summer Johnson received a certain stem cell treatment and has been in remission for more than three years, recovering from the brink of death. The brother of Mary Carmona has been attempting to obtain insurance reimbursement for this treatment in Philadelphia but has been denied due to its apparent experimental nature. Yet there seems to be other examples like Summer's mother how this treatment is working where other treatments are not. There must be something we can do to get this treatment recognized so affected people can return to their normal lives. I can only express how I witnessed the tears of joy in Summer's eyes as she expressed her gratitude that her mother is not only alive today but living a full life due to this new treatment. Just thought you should all know. "The Julia Lynn" was fired up and the husband of one of the participants got a chance to try her out. He was surprised how light and nimble "The Julia Lynn" is! All in all it was a quite worthwhile event as we touched a lot of peoples' lives, including many people who stopped and learned about scleroderma for the first time. The rally lasted for more than an hour. Well we've got to get ready to hit the road how. Next destination is Album Park in El Paso. Texas. Tonight we are going to be interviewed by Channel 10 at their station offices in Odessa / Midland at 7 p.m. Check out the web postings! Talk to you later! Day One, Feb. 27, 2006 My dad, brother and sister were there to watch my dad christen the bike, “The Julia Lynn.” Most of the racing team was there, too, for photo ops. A great rally. About 40 people showed. Though there is no rally in Odessa, Texas as of yet, I did schedule an interview with KMID-TV Channel 10 at 7 p.m. on Wednesday in Midland, about 15 minutes from Odessa. They seem pretty interested to put us on the TV for the area. By the way, there was one really touching moment when Albert Avila gave me a small leather bag with the hair from his sister, Susie M. Avila. Susie passed away in late January from scleroderma in much the same manner as Julia Lynn. I promised Albert to wear the pouch around my neck for the entire trek. At each rally stop I am going to mention Susie to the crowds and take a pinch of her hair and let it blow in the wind. Albert was moved to tears. Susie always wanted to ride a motorcycle but couldn't because she could no longer grip. This is Albert's way of honoring his sister's dream and wish. You will see the pouch around my neck in photos. We had each scleroderma patient or family member talk about how scleroderma has affected their lives. We took pictures and got their names. I will be forwarding photos and names to you plus posting on the website tonight. Thought you should know. All in all a good start. We're pretty excited that things have all fallen into place. Jim Filanc |