The Thomas Ohlson Memorial Fund

Thomas W. Ohlson was committed deeply to his family, friends, country and the entire ALS community.  He had a passion for pushing research and drug development forward and was often challenging the leadership within ALS organizations to do more and to take bigger risks.  He became active on social media in a big way following being told he had ALS and went on to share his story with Facebook and MTV – bringing not only huge awareness to Lou Gehrig’s disease, but also inspiration to countless millions of people, including the thousands which followed his posts, thoughts and ideas via social media.  He never shied from telling it like it was and thrived off of the love he received from his family and friends.  Tom was a leader throughout his entire life and this memorial fund will continue Tom’s commitment to helping to find an end to ALS. 

Tom was the 2011 recipient of the Fran Delaney Award. Below is his acceptance speech:

Along with Lou Kobbs, I also want to thank Rob Goldstein.  Rob not only does an amazing job as the face of ALS-TDI, but is an always-available conduit of information for so many of us dealing with ALS.  And of course, I thank everyone else from ALS-TDI for all that you do, especially those who toil anonymously in the lab.  Your devotion to finding a cure for ALS is praiseworthy and greatly appreciated by the entire ALS community.  I also want to thank all those who nominated and voted for me–I am truly humbled by your gestures.  Finally, thank you to my wonderful family and Facebook friends for your constant love and support–without you I would have been just another ALS statistic.

This award is bittersweet in many ways.  I am honored to be included among past and current ALS-TDI award recipients, many whom I consider friends.  I have had the good fortune to know past and present award winners Michele Dupree, Sharon Iles, Eric Valor, Frank Provost, Steve Saling, and the ever-inspiring Corey Reich–all who are doing great things in the ALS community.  I was also truly honored to know Megan Mishork and my predecessor for this award, Tim Lafollette.  Their struggles were immense, but so were their spirits.  The only other time I have had such young friends or colleagues presented with awards posthumously or while in critical condition, was when I served in the military.  This only serves to underscore that we too are at war–the difference being that none of us signed up for this.

Both Lou and Rob have told me of Fran Delaney–a remarkable person, who pushed everyone to be better at what they did, all while fighting his own battle with “The Beast.”  To be presented with an award representing such an individual is sincerely an honor.  However, in the spirit of Fran Delaney, I do not intend to take my award and just be thankful.  This is the Fran Delaney Challenge & Respect Award.  Now, I do not know who came up with that wording, but I fully intend my own literal interpretation of it–ALS-TDI, expect to be challenged.

I was fortunate to have met Steve Perrin at a recent ALS 101 seminar and I came away very impressed with both Steve and the work ALS-TDI is doing–we all respect what ALS-TDI doing.  However, there is a big difference between being respected for what you are doing and being respected for what you have accomplished.  I know ALS-TDI is close, but close only is good with horseshoes and hand grenades.  When Jamie Heywood came up with the idea for what is now ALS-TDI, he had a goal in mind–circumvent conventional drug development with a streamlined, singularly-focused research lab, staffed by people who could think outside the box.  ALS-TDI must remain true to its original intent.  ALS-TDI must be fluid, resourceful, and innovative in how it does business.  Your responsibility is such that you absolutely have to be the best there is at what you do–lives depend on it.  As such, I challenge all of you to remove forever the ALS from TDI and to never again have to give another award posthumously.  Thank you.