Current Understanding of the Cell Biology of ALS and Related Therapeutic Approaches.

Mary Free Bed
2nd Floor Conference Room
Grand Rapids, MI
June 24, 2010
6:30pm-8:00pm

Please contact Denise George, Patient Services Coordinator with any questions. 616-915-4979. Everyone is welcome to attend this free conference!!!

Presented By:
Merritt K. Taylor Ph.D.  Assistant Professor Grand Valley State University | Biomedical Sciences_Cell & Molecular Biology |


The discussion will include:

* What insights do scientists have about how ALS occurs?
Scientists have been attempting to understand what mechanisms have been disrupted in ALS and recent findings will be reviewed.

* What kinds of related therapies are being tested or considered to prevent or stop the disease?
Scientists and clinicians have been using insights from cell biology to develop therapeutic approaches towards ALS and the current status of some of these approaches will be discussed.

Guest Blogger: From a rider to her family

What an event this past weekend. The 2010 Gears & Beers was a success. Over 120 riders and over $40,000 raised for our cause. Please read the following email we received from Sarah Crawford, one of our riders from this year. Thanks Sarah for agreeing to let us post this.

To the wonderful group that pulled this day off:
This was an email I sent to my family and friends, but thought I might also send it your way. Thank you for your relentless work towards finding a cure.
Sarah C.


Yesterday was an amazing day full of many triumphs and tribulations. I want to again thank you all for your words of encouragement, donations, and prayers. In regards to the one hundred miles, I am disappointed to report that I did not finish. I was only able to complete 75 miles of the race. I plan to finish my goal tomorrow and finish the 100 miles I set out to do initially. What I did do however, I am tremendously proud of. It was the longest ride I have ever completed and even when I was tired and sore, I kept going. This was truly possible because I had such a wonderful support group and riding team. Thanks Katie and Greg!

Race Day Run-down:

At 8:00 we were taking pictures and discussing our routes (25 mile, 75 mile, and 100 mile), and the hills we would encounter. We kissed our families and friends and bid them farewell at 8:30. Phil was there to send us off and wish us luck.

Miles 1-11. Smooth sailing with the exception of one MONSTER hill on country club road. I was not sure that one would ever end. These miles allowed several groups to pass by us, one of which we would meet up with several times along the way. We did not know their names but they (like many) got lost more than once. We loved this group because they had a radio attached to one riders bike that played oldies as long as he was pedaling. "sugar, dada da da, OHHHH honey honey, you are my candy girl...". This was one of the songs that we heard. If you don't consider that an "oldie," I apologize and know that I love you (: The best part of these first 11 miles was when we saw Phil at the first rest stop. All three of us (Katie, Greg, and I) got a big boost from seeing him, one that would carry us through many hills and miles.

1st Rest Area thoughts - Dexter, MI "ALRIGHT... time for a snack. I am totally finishing this race. I feel AWESOME! My butt is feeling good. WOW! It is humid, better drink a lot of water. Good thing I have this camel pack from my mom to keep my hydrated. Thanks mom! Speaking of staying hydrated, I have to pee. What do you mean the bathroom is another mile down this path? I guess I don't have to go that bad.

Mile 11-29.4 This part of the route seemed especially hilly. My legs started getting really tired around mile 15. I kept pedaling and tried not to complain. I ran out of water by mile 20 but kept going. I was working really hard to keep up with my group. This was a feeling I wasn't used to. I was not able to get up hills very easily and started to lag behind Katie and Greg. I felt really bad that I was slowing them down and had some moments when I wasn't sure I would be able to finish. I was very surprised that I was having these feelings so early in the race and began to get discouraged. I decided to keep going and just worry about one hill/stroke at a time. I told Katie and Greg to not wait for me. They both said nope and that we were sticking together. Then they told me to get in front. It was about five minutes later when Katie said to me... "Sarah your seat looks low" When she said that I stopped worrying about not finishing and started to listen to my body. Katie was right! DUH! My legs are tired! Why are they tired? Because your seat is too low! My knees were very bent even at the bottom of my stride and were aching a little.The difference was immediate! I raised my seat approximately six inches, but this was a mistake that would make the rest of the ride somewhat more difficult. I had expended a lot of unnecessary energy.

2nd Rest Area thoughts - Unadilla, " I REALLY have to use the bathroom! So glad I can fill up my camel pack again. My legs feel better but they're still tired. It feels REALLY good to get off the bike. This should be a short stop, we need to get back on the road to make it to the 3rd rest stop before 1:00." This was the cut off time for a supported 100 mile racer. On a side note, people that had passed us earlier were just showing up as we were getting back on the road. Like MANY other riders, Kerry (Phil's wife) had taken a 10 mile "detour" because one of the roads was marked wrong. We were lucky enough to notice that the sign and our directions did not match. A car stopped (apparently we looked lost) and gave us directions. Second side note... I had my first GOO PACK (thanks Becky), FYI it tastes a lot like, and has the consistency of, a small tube of the Colgate gel toothpaste. It was VERY thick and VERY difficult to swallow. It was the first and last Goo pack of this trip. Final side note... spandex bike shorts are remarkably difficult to get back on when sweaty! This was increasingly difficult every time we would use the bathroom (which was like every ten miles, no joke).

Mile 29.4-52.6 Started out really good. I had a boost of energy and made it through about ten miles strong, but Katie and I had to go to the bathroom about 10 miles in. I had already gone through two camel packs of water. It was urgent. Katie and I decided that in the next woodsy area or grassy field we would stop. It ended up being grassy. Noooo problem. Katie and I walked back into this grassy patch and stomped down a crop circle just big enough for a butt and well... so on my way out of the grass, I looked down at my legs and I had red splotches ALL over them that were definitely not there prior to the walk back into the devil weeds. I had some sort of immediate allergic reaction to the grass (which I truthfully am allergic to virtually everything with a root system) but had never experienced anything like that. What are you gonna do? Other than looking like I had just caught the chicken pox from the waste down, I was fine. So we kept going. I had a lot of good moments where I would get in a stride going up hills and I also got good at using the "other" side of the hill to pick up speed rather than coast. However, it was after mile 45 or so everything began to get sore and tired again. I began to remember the hard seat and the truth that I was not even half way. I began to face again the thought that I might not be able to do this. Self-doubt was the most lingering problem during this stretch. I thought about Phil and about my uncle and I wanted to keep going for them, but there were moments when things began to hurt and I just wasn't sure that I would be able to do it. "I was only half way after all and things could only get more sore from here." I shed a couple of tears somewhere in this stretch. I felt like I was letting people down and like I was letting myself down. I again ran out of water with about 7 miles to go.

3rd Rest Area thoughts - Sibley Rd. Stockbridge, " GET ME OFF THIS BIKE!!!" This was really the only thing I was thinking at this moment. Well that and "WHERE IS THE BATHROOM?!" until I found out that we had missed the 1:00 time by 15 minutes. We had to decide whether or not to do the last 50 miles of the ride "unsupported" meaning no more rest stops until the finish 50 miles from now, or the last 25 miles "supported" meaning skip miles 52.6-72.5 that is a side loop from the spot where we were standing that brought us back to the same rest stop and just keep going to food and friends. To go right or to go left? Sometimes it is hard to know which is the right way. Yet here we were, forced to choose. As we shoved oranges and luna bars in our faces, we slowed down a bit when we realized that it might not be the best decision to do the extra loop "unsupported." We were thankful for the rest stop and decided to continue.

Mile 72.5 to Finish - By now I had figured out that it ALWAYS feels good to get off the bike and after just a few minutes of walking around, getting back on felt okay. Those rest stops were completely necessary to recuperate. I got a boost of energy right away from eating and from drinking more water and gatorade. The three of us were sad at the rest stop when we were faced with this decision to make. Limbo is never a good feeling. "wheresoever you go, go with all your heart." Upon reaching this conclusion, I felt lighter. I decided that I had already accomplished what I had set out to do which was to race and to raise money for an extremely worthy cause. I had let go of my fear of not finishing because I WAS going to finish even though I would not complete the amount of miles I had initially hoped for. I was on my way home so to speak. It was the final stretch. The race was certainly NOT over, but we were on the "other side." I felt new pain this last stretch. As I am sitting here tonight typing, I have an ice pack on my right knee. Nothing is sore except my knees and truthfully that was an intense pain for the duration of this last stretch. My sister is convinced that my knees were aggravated from my seat being too low early on. All I knew was that it hurt going up hills and over bumps (which there were plenty of those too). But even now as I have this ache, I am smiling because I know that I helped. No matter how small my part was, it was in the right direction and my heart was in it one hundred percent. It does hurt going up hills, bumps truly suck, but we DO learn from them and I KNOW that I am a stronger person for having completed this journey. Getting lost... well that is all part of the journey too I guess.

As bikers entered the park, there was no finish line. Just people standing around cheering and then there was Phil surrounded by those that loved him. There could be no greater symbolism of the day than this. In truth, how could there be finish line? Our work is not done. My part, not complete. I forgot about my pain when I saw my family. I forgot about all of the hills and bumps that made me weak just a few miles prior and I got teary eyed. I, like the 24 other people riding from the Hutchins Team, would do this a thousand times for the chance that it might mean finding a cure for this disease. I am proud to have been a part of this day and of this cause.

Thank you for being with me on this journey both in body and/or in spirit.

Sarah Crawford

P.S. I am committed to doing my part to find a cure. Hopefully next year we are riding 100 miles in celebration of a cure found.

Biomarker Research Study

Research Update from The ALS Association’s National Office
May 27, 2010


ALS Biomarkers Clinical Research Study Call for Participants
Researchers are looking for 250 people to participate in an ALS biomarker study. Anyone interested in participating should select from the list below and contact the closest medicalcenter. Participants must be at least 30 years of age, be willing to have blood and cerebrospinal fluid (CSF) drawn for the study, and participate in follow up phone calls and visits approximately every 6 months.

The ALS Association has funded several studies to support efforts to identify biomarkers: in particular, a collaboration between investigators at University of Pittsburgh, Massachusetts General Hospital and Metabolon (a diagnostic products and services company) to identify signatures for the disease. Initial studies identified potential markers. Most of these biomarkers have been discovered in the CSF. It is crucial to repeat these findings in a much larger number of samples to better evaluate the ability of the biomarkers to accurately predict ALS. We must
also determine if these biomarkers can not only be recognized in the CSF but also detected in the blood. It is anticipated that some of these biomarkers may also help predict treatment outcome.

Continued funding through The Association and more recently the National Institutes of Health (NIH) is enabling the collection of CSF and blood from 250 individuals with ALS, suspected of having ALS or another motor neuron disease, and healthy individuals. Dr. Robert Bowser from the University of Pittsburgh and Dr. Merit Cudkowicz from Massachusetts General Hospital are the leaders of this investigation. The grant application for this study won one of the prestigious NIH Challenge awards funded from the American Recovery and Reinvestment Act of 2009 (ARRA stimulus funds).
The drive to more rapidly develop effective therapies for ALS highlights the importance of early disease detection and ability to monitor disease progression.

Clinical measures of muscle and nerve function are currently used to both diagnose ALS and follow disease progression. During the past decade, tremendous advancements have occurred in the discovery of a variety of biomarkers for the diagnosis and treatment of many human diseases. Biomarkers are defined as any characteristic that can be accurately measured in the body and used as an indicator of normal or disease processes. Biomarkers may be genetic (such as SOD1 mutations for a familial form of ALS), proteins or products of metabolism.

Currently, 30 medical centers across the U.S. are participating in this study. They are collecting CSF and blood samples from people with ALS, people with neurological disorders that have similar clinical features to ALS including hereditary spastic paraparesis (HSP), primary lateral sclerosis (PLS), pure lower motor neuron (LMN) syndromes, multiple sclerosis (MS) and people with no known neurological disorders.

All samples collected will be placed in a sample repository for use in future ALS research studies. The sample repository is available for use by ALS researchers and scientists around the world to better understand the disease. The samples from this repository have been provided already to 6 different scientists searching for biomarkers in ALS. Participants in this study will help us to better understand, prevent, diagnose or treat ALS.