Tonight, a group of friends and neighbors will gather to hear about the research of Dr. Ernest Frankel from MIT and the innovative work of Craig Boyce, who is using a hedge fund model to fund multiple projects with a real rate of return and real investors.
The cure is coming, but we have to get creative.
My remarks to the group :
AWN Remarks 10/24/18
I am two and a half years removed from an ALS diagnosis
And I am hopeful.
These are exciting times
The status quo will not cure this disease,
And the status quo will not fund that cure
It will take creativity, collaboration, commitment, and learning
Thank you all for joining us in this fight.
It’s worth fighting.
This Sunday 100 or so of my favorite people hopped on bikes and rolled the final miles of the ALS TDI Tri State Trek with me.
The key word in that sentence was “with.”
After we crossed the finish line, I was presented with the “Forster Saling Spirit and Inspiration Award, “ named for Steve Saling and Bob Forster, two indomitable spirits and incredibly active men despite their fight with ALS. I am humbled and inspired by their model. Bob and Steve don’t do it alone.
ALS is a disease that takes more than one person on a journey they were not expecting.
Parts of it really stink.
However, there are amazing days, like this Sunday, when friends take the road with you, and laughter, stories, and hugs take over.
My silver linings are many. None brighter than the love, support, and laughter of my friends.
This morning I went through my first round of strength testing since my round of treatment in November and December in South Korea. My results, both the strength of my arms and legs and my breath capacity, were compared against the numbers from the same tests taken to establish a pre-stem cell therapy baseline in October and early November.
There was no difference in the numbers from the baseline to today. This suggests that there has been no progression in my disease based on these critical metrics over the last four months. That is a remarkable outcome – one that has been exceptionally rare in the world of ALS science and care.
I am so grateful to have been able to travel to Seoul and receive the treatment which early returns suggest is doing its job. Monitoring my strength and breathing over the next few months will be important to determine how long the effects of the treatment will last, and when or if another round is advisable.
Until then, I'm enjoying this result!
"A lot of my friends used to want to be professional football players, and actors, and singers – now they all want to be doctors… All of them."
And with those words my fourth grade son hopped out of the backseat of our car and sprinted off to water polo practice.
Our journey with ALS over the past year and a half has been one in which we have tried to maximize the learning opportunities – not only for our family, but for our community. We have done great good collectively, but every once in a while the weight of a topic like ALS can seem a little heavy for children. It is a little heavy for all of us.
The comment from my son told me our approach was spot on.
I love sports, and movies, and singing, but if the conversations of the last year have resulted in a pack of future mad scientists, doctors, and problem solvers – I will take it!
The past year has been one of great challenge, but also one of immense hope. The people I have met along this journey, especially those who have dedicated their lives to the science of this fight to cure ALS, fuel this hope.
I have had the opportunity to work closely with the good and brilliant people at ALS TDI, be inspired by their work and enthusiasm, and educated by their quest.
Earlier this month I was asked to join their Board of Trustees. I believe in their mission and their work, but I am inspired by their people.
Please see this link for the press release about me
... and follow this link to learn more about ALS TDI and the groundbreaking work they do.
I was the grateful recipient of a childhood spent in the arms of the community built around helping others, my boys are now as well. There is nothing quite like having a village of friends and family looking out for you, calling you out when you do something dumb, and wrapping you up in a hug when you need it most.
A friend shared quote recently, "you don't know the power of a community until you are part of one."
Over the last two weeks, 1100 members of our Greenwich Country Day family broke the world record for the ice bucket challenge, we raised over $200,000 for ALS research and care, and I began making plans for my first trip to South Korea to receive stem cell therapy.
I am so grateful to have this opportunity, but I am forever indebted for my community, near and far. The support, love, and enthusiasm with which our friends and family have helped us is overwhelming and deeply appreciated.
My life over the last two years has been anything but uneventful – I can't imagine that will change! I'm looking forward to sharing that continued journey.
Over the past five years I have had many occasions to reflect with gratitude on this community. Never has that been more powerful than this past weekend. The love and support our family feels from this community is overwhelming and wonderful. Thank you.
My new position this fall has afforded me a unique perspective on the whole of our school. I have had the opportunity to teach Upper School design classes, work with faculty in our Middle and Upper School, shake hands in all three divisions, write an article or two, and dive deeply into the schoolwide work of health and wellness.
A purposeful day is one in which you seize the opportunity to learn something new – I am distinctly advantaged in this pursuit!
There has never been a more exciting time in ALS research and care. However, there is so much still to learn and one of the greatest challenges is making the advances in science available to everyone who might benefit. Collaboration will be a key in ending this disease, and our charity partners for the Walkathon are dedicated to this aim.
One of the most exciting scientific advances in developing therapies has been in stem cell treatments. Thanks to the support of our family trust, I will have the opportunity to travel to South Korea three times over the next four months to receive this therapy. The data on their early work is remarkable, and I am hopeful that it will make a real difference.
Thank you for helping to make this possible.
Andrew, Eliza, McCrory, and Towns
I believe there has never been a more exciting time in ALS science. The creativity that comes with looking at problems from different angles, collaboratively, and with unprecedented advances in technology, gives justified cause for hope.
I have heard more than once that ALS is not an incurable disease, just an underfunded one. That truism, when combined with the avalanche of ideas in the scientific world of this fight calls for commensurate creativity in the world of support.
This past week, Dr. Andrew Lo, Prof. and Director of the Center of Financial Engineering at MIT, presented to a group of educated and interested listeners in Greenwich on his unique theory around funding the research and therapy development in the fights against rare and devastating diseases. He uses a hedge fund model to not only sustainably support large numbers of projects, but deliver a profit for investors. The group that gathered out of friendship to hear Dr. Lo learned of a way to do real good using a creative approach.
His explanation is far more articulate than mine. Please find below the link to a talk he gave on this model – in this case, funding cancer research.
Link to Dr. Lo’s talk.
In the century that ALS has been an official diagnosis, more progress in the science has been made in the last three years than in the prior 97. There is no coincidence that about three years ago the ALS ice bucket challenge brought worldwide attention and support, roughly $200 million, to this work.
I cannot think of a more compelling reason to bring a keen focus on the opportunities for science and support. I am so grateful for the hearts and minds of the people involved in both.
This past Friday the official fundraising page for the GCDS Walkathon went live. The walkathon is a unique event for us, as it builds community awareness around our homecoming weekend. Our fundraising is intentionally embedded in the midst of student traditions and celebrations. Our goal is to raise support for, in this year's case, ALS research and care, and to do so in a way that educates the adults and the children in our community. As a school we believe this is the way to make a profound and lasting difference.
I invite you to visit the link below to learn more about the charities we have chosen and the ways we are planning to learn and support.
Link to Country Day Walkathon page
Many of us are familiar with the common description of ALS disease progression. It is dire.
This was the subject of a conversation over a trip to New Orleans this Mardi Gras with Blair Casey, VP of Team Gleason. Blair proposed that advances and adaptive technology have made these numbers increasingly inaccurate. He stated that the ability of people to engage meaningfully in a full life through the use of technology would serve to fuel the personal fight against the disease. I agree, and the exceptionally full life of Steve Gleason is proof of Blair's theory.
The work of Team Gleason and others to facilitate the development and distribution of adaptive technology for people living with ALS is cause for significant hope.
A recent study was published out of Stanford University heralding the results of a phase 1 trial in which a microchip was implanted into the brain of three subjects, including a person living with ALS. The microchip had the ability to sense over 100 discrete motor commands sent from the brain, and it was able to allow the subject to type using their thoughts. The subject had only to imagine their right hand pressing the key on a keyboard, and the chip would send that signal to a computer interface.
As the researchers are quick to point out, there is a long way to go on this technology, but the possibilities are extraordinarily exciting. In this initial study the subject is able to control and communicate through the use of a keyboard, but it does not take much of a stretch of imagination to picture some of the other things that might be possible through this breakthrough. This technology is a game changer.
I am writing this post through the use of Dragon dictation software. A decade ago, my ability to produce text at a reasonable rate, one of my very favorite things to do, would have been next to impossible. I am so hopeful and encouraged when I think of what I, and others living with ALS, will be able to do thanks to technology a decade from now.
In an earlier life I was a reporter. I love telling stories, and I enjoy learning from and sharing the experiences of others. Recently, I have had the humbling experience of having my own story shared. In every case it has been presented thoughtfully and eloquently.
I am grateful for this, and for the opportunity that my story gives me to bring attention to the broader fight for a cure for ALS. That my story, or a piece of it, may be helpful is all I can ask.
Please see below for links:
Greenwich Sentinel – Greenwich International Film Festival
Good Morning America
Greenwich Sentinel – Tri State Trek