TDI Weekend – November 2014


Cara and I spent this past weekend up in Boston visiting ALS Therapy Development Institute. ALS TDI is a nonprofit biotech solely focused on finding a treatment for ALS. It was started by a patient and his family and continues to be closely aligned with patients, having a patient as the chairman, and family members of patients making up the majority of the board seats. The funds we raised this summer from our event in New York went to TDI and Cara and I continue to strongly believe in their mission and team.

On Thursday, TDI hosted a Leadership Summit. They had presentations from a number of scientists and a panel focused more on the business side of drug development. Then Saturday night was their annual gala. And on Monday, I got to tour the lab and gave my samples for their Precision Medicine Program.

This is a program that got accelerated by an influx of funds this summer. They originally planned to collect data from 25 patients, but now are enrolling hundreds. On Monday alone, they had six patients in. They took blood and a skin samples from me to be used to map my genome and to grow stem cells. Then they will test 50,000 drugs against each of our stem cells to try to see if they can find subgroups of responders. One of the most difficult things about this disease is its heterogeneity. Patients differ in their age at onset, the location of their onset, their progression, etc… So it seems crazy to think that some drug will affect everyone the same, but that’s how most traditional trials are set up. This program will be able to move somewhat in reverse, first identify who responds and then look for commonalities in patient’s backgrounds or genetics. I also get to wear accelerometers that will track my movements so they can look back over time and see what influences progression. (Right now the devices are kind of distracting as I keep waiting for them to start flashing to let me know my table is ready.) TDI is using technology that has only recently become feasible on a large scale and are quickly deploying funds to try to find answers as fast as possible.


I think the two most amazing things from the weekend were meeting the patients that were there and the team from TDI. I got the chance to speak with a number of scientists and operations people throughout the weekend. You cannot help but come away incredibly impressed by their passion for what they were doing. Not just that they thought the science was interesting, but they were truly devoted and passionate to finding a treatment. They were emotional when speaking with patients, recognizing they weren’t trying to solve some puzzle, but they were trying to save our lives. Many of the employees that TDI came to the organization because they had some connection to ALS, but the others are hooked as well. They recognize how far this science has come, but more importantly realize it has to be pushed further to truly make an impact. One moment that stood out to me was towards the end of the summit Dr. Perrin, the CEO, said, “I am not going anywhere. I’m staying here until this is done.” That was sense you got from each individual. They haven’t just bought in to the mission of the organization, but they see it as their own personal mission to end this disease.

I was one of six people honored with their annual leadership awards at the summit. You had Anthony Carbajal, who always wears his heart on his sleeve, perfectly cry through his speech ( Hope and Steve Dezember perfectly danced through theirs ( Pat Quinn was partying at a buddy’s wedding, but sent a video and you could see his determination to make a difference ( Then there was Deb Quinn, a patient who movingly spoke about her family being ravaged by familial ALS. More than 20 people in her family have died of ALS and now she has a son with the SOD1 gene causing her to proclaim, “I will never be silent about ALS.” Her speech is here, It’s amazing.


At the cocktail hour on Friday and at the gala we were able to meet other patients and family members. People who I talk to online. Families committed to pushing TDI forward. Advocates fighting to improve patients’ lives. People who of lost loved ones to this disease, still doing everything they can to change its course. (Sarah Coglianese describes meeting some of them here: If you are not diligently reading her blog, you need to start. Now.)

As we were flying home, I was thinking about all of the great people we had met over the weekend. I was smiling thinking about having turned my Internet friends in to real friends. So many great people facing a similar future to ours with positivity and determination. Everyone had a spark. People who love life and won’t let this disease change that. People who I can’t wait to see again. But then it hit me. By next year’s gala, we will all look different. Some of us may lose our ability to walk, for others the ability to talk, for others the ability to breathe. Science is moving at an incredible pace, but so is the disease. The urgency is still there. Like Deb said, we can never be silent, we must continue to keep ALS in the spotlight, and to make sure organizations like TDI have the resources they need to move forward as fast as possible.

However, it is comforting to know we are in this with such great peers, families, advocates, and scientists, all working to end ALS.



3 thoughts on “TDI Weekend – November 2014

  1. I was so excited to see a new post from you today. Again your true calling is writing, I am waiting for the book. So glad to hear that the funds that are being raised are making a difference. Keeping ALS front and center is the task. The ice bucket was/is incredible but just because you have dumped a bucket on your head doesn’t mean the jobs done. Thank you for the photos of your family you are all so precious and in my prayers.

  2. I also live in SC and was diagnosed in April 2013. I am going to Boston in January to participate in the TDI study. I am so excited 🙂 feels great to be a part of something so promising 🙂

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