I’ve woken up every day for the past 4,595 mornings with ALS in my face. Whether it’s waking up with a cramp in my leg, trying a few times of rocking to get out of bed or flipping off my mask of my BiPap machine. Before I have a chance to fully awake and form a thought, there’s ALS. That fatal disease that has no cure and no treatment.
Those who know me, know I’m grateful. I believe I am one of the lucky “unlucky” ones. I’m optimistic. That’s the world I choose to live in. ALS is not my choice. To be hopeful is. I am blessed with a precious community that fosters so much positivity. That community helps counter those feelings of isolation that sometimes come with this disease. Living with a fatal disease with no cure, it’s tough not to be relentless in the fight to end ALS.
So anytime I’m with someone who shares my passion to advocate and champion a cure, it’s comforting. When that someone is a researcher, it’s encouraging. It’s something else to see those who have the ability to find a treatment or a cure just as hopeful as someone who lives with ALS. It brings my hope to a higher level. That’s what happened this week in Boston.
I was able to see first hand, ALS Therapy Development Institute (ALSTDI), a nonprofit company that was born out of love by James Heywood in honor of his brother, Stephen who was diagnosed with ALS at 29. They started with just three people meeting in their family basement and today hosts a team of 30 full-time researchers in a 26,000 square foot lab in the Biotech neighborhood of Cambridge MA.
This week, I gave blood and skin samples to advance my participation in a cutting-edge Precision Medicine Program at their lab. Since June, I’ve been contributing ALS Functional Rating Scale input, completing personal and medical history surveys, speech recordings and tracking exercises. The study’s goal is to identify what sub type of ALS each patient has and then screen potential treatments for each type. The thought is that a compound might work for a particular strand of ALS, even though it doesn’t work for all. They will be exposing all types to a variety of different compounds to see if any FDA approved or new drugs show positive results. It’s a unique study, where patients can follow their own data in real time as their genomes are sequenced & cells are grown. Patients become a partner in research.
At ALSTDI, there have been almost 300 drugs screened with 3 currently showing significance. ALSTDI is a non-profit biotech where 87% of every gift is spent on research in the lab. It is the world’s first and largest non-profit biotech focused 100 percent on ALS research. I understand that this bond with research is stronger if you have ever had or have a personal connection with ALS. It’s tough to imagine how devastating ALS is unless you’ve seen it. The hard facts that 90 percent of ALS cases are random and every 90 minutes someone in the US is diagnosed with ALS remind us that ALS shows no mercy.
After I finished this entry and before I posted this, I received a call from the lab saying that my blood work showed I had one or more pathogens show up. Therefore they will not be able to do my genome sequencing and grow my neuron cells. Apparently out of the 273 participants, I am only the 3rd to not pass the blood test. Although they will not be able to use my samples, I will still be participating by providing monthly personal data. I am extremely disappointed not to be able to be fully engaged in the study,. My first instinct was to bail on publishing this. Then I realized how selfish of me that would be. There is an entire ALS community counting on the success of this lab and others to find that treatment and cure. I will be supporting the lab & their efforts and invite you to join me if you are moved to do so.
I have created our own page to hosts any donations from our Kids4Cure community.
Click here to donate: https://www.classy.org/campaign/for-the-love-of-the-lab/c102749
Thank you for your continued love and support to me, our family and the entire ALS community