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  • Debbie Maier Jacknin

We Will Cross That Covered Bridge When We Get There

Have you ever had a time in life where you are trying plan something and nothing looks like it is going right? We Will Cross That Covered Bridge When We Get There is our artist way of expressing those feeling.

Larry and I went to Boston in May 2015 so he could participate in an ALS study at ALS Therapy Development Institute (TDI). TDI designed a research program called the Precision Medicine Program for 20 to 25 patients to participate, but thanks to ALS ice bucket challenge and subsequent money raised, they had money for 450 participants.

This blog entry into two sections, information about the study and our adventures (almost misadventures) getting there.

We were warned that Boston is a hard city to get around in a wheelchair but we had traveled to other cities, so, how hard could it be? My dear friend and roommate from college, Madeline and her husband Steve, live in a ranch style home. All we needed was a way to get around and a few ramps. Right?

Well, we hit one road block after another. A taxi service with wheel chair vans told us they could get us from the airport to my friend's house and could PROBABLY get us back. Probably?

I don't give up easily. Next idea. Let's rent a van and ramps. Very expensive. I'll spare you the rest of the ideas I came up with and why none of them worked. We were getting very discouraged. We even considered canceling the trip.

I made one more call to Compassionate Care ALS in Cape Cod. A woman there asked me what I needed. The next day, I received a call from the founder, Ron Hoffman,"I heard you need help getting around. When are you arriving and leaving?"

Me, "May 2015"

Ron, "I have a van you can borrow. What else do you need?"

Me, "A ramp".

Ron, "Have your friend take a picture of her steps so we get the correct ramp. What else do you need?"

Me, "Toilet seat and shower seat."

Ron, "Done. What else do you need?"

Me, "That's all."

All those items were delivered to Madeline and Steve's house prior to our arrival. Madeline and Steve picked us up at the airport in the van. The house was fully accessible when we got there.

Wow. That's all, just wow.

Larry and I have continually been overwhelmed by the kindness of others. So many people have come to our aid. Dealing with ALS can be overwhelming. Anytime we seemed to get frustrated or discouraged people come to our aid and we realized how truly blessed we are.

The study in which Larry participated was very interesting. A medical team took skin and blood samples from Larry and we were given a tour of the lab. The blood sample was used to complete a genome sequencing for Larry. We learned that approximately 33 genetic mutations have been found that relate to ALS, but only about 10% of all ALS patients have those genetic markers.

ALS is a hard disease because it does not follow the same course with each patient. With Larry, the disease effected his hands first, then his breathing and eating; and, last his legs.

They will be taking Larry's skin sample, and making fibroblasts for cell line creation. Data obtained from Larry and other patients will be instrumental for identification of the subsets of ALS patients who differ in the clinical and/or mechanistic aspects of their disease. This information is expected to enable more efficient discovery and clinical development of therapies for ALS. They will test various drugs and compounds on the subsets of patients to see if something will make unhealthy neuron cells look more like healthy ones. They can test up to 1500 drugs and compounds at a time. If something looks promising, ALS TDI will take the appropriate next steps to move the drug or compound forward in their research and discovery. Larry's brother, Sam, also participated in the study by giving blood and skin cells. They are very interested in looking at the similarities and differences between cells in siblings where one has ALS and the other does not.

We saw this sign on one of the doors at TDI.

Might this be the attitude of the person who will make the breakthrough in ALS research? How often is it someone who is not afraid of mistakes or failure who makes the biggest difference?

This is the Tree of Life stained glass mosaic we did for Madeline and Steve. Larry and I are not your typical house guests. We feel truly fortunate to have friends who not only accommodated us, but welcomed us. Click here to learn more about the Tree of Life. Unique to their mosaic are the five butterflies which memorialize Steve's sister and their parents who have passed on.

Larry passed away February 23, 2016. Debbie is still creating stained glass mosaics. She does custom work and can be reached at 412-427-5500 or

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