When I was seven years old, my dad died of ALS. His having ALS greatly impacted my childhood and my relationship with him, preventing us from doing 'typical' father-son activities. I've now lived more of my life without my dad than I did with him, and I continue to feel the loss of him every single day. As I embark on my college search, I wish I could have had his guidance on navigating all the new aspects of life I’ll be encountering.
Unfortunately, ALS continues to be a cruel disease. The disease disconnects one’s muscles from their nerves, which results in paralysis, including the muscles related to breathing. The worst part is that ALS can strike anyone, no matter of age, race, or gender, and that there is no cure.
When the ALS Therapy Development Institute invited me to speak at their annual White Coat Affair gala last October, I took advantage of the opportunity to tour the Institute’s lab where they are performing fast-track ALS research. While there, our tour passed by the freezer where AT-1501, a potential effective treatment for both ALS and Alzheimer’s, is stored.
To explain briefly, ALS TDI’s research shows that at least 70 percent of patients with both familial and sporadic ALS, as well as Alzheimer’s, have an immune response, even though neither disease is caused by a virus. AT-1501 is an antibody therapeutic which acts to reduce parts of the immune system in an effort to protect nerves from the progression of both neuro-degenerative diseases. According to Dr. Steven Perrin, ALS TDI's CEO, “AT-1501 is the most effective treatment ever tested at ALS TDI.” That's after testing hundreds of different treatments on the more than 30 genes they have discovered.
On our tour was someone who had been recently diagnosed with ALS, but who had already lost her ability to speak. When she saw the AT-1501 label on the freezer where it is stored, she stared at the freezer with tears in her eyes. I could feel how much she wanted to take a chance with AT-1501. Many ALS patients I know share this view. They are dying and will try almost anything, especially a medication with such great potential, that has a chance of slowing their ALS progression and improving their quality of life. However, ALS TDI needs at least $30 million to get through the Pre-Clinical, Phase I, and Phase II FDA trials in addition to continuing their other ALS research.
When I attend the next White Coat Affair later this year, I hope to hear that the Institute has been able to file the Investigational New Drug Application with the FDA, which costs at least $750,000 and is required to proceed with a Phase I Trial.
Every year I raise money for ALS research in memory and in honor of my dad. To coincide with the tenth anniversary of his passing this October, I hope to raise an additional $8,567.76 for the cumulative amount of $50,000. To help accomplish this goal, I’ll be participating in the Young Faces of ALS Atlanta Corntoss Challenge on Sunday, April 23. All proceeds will benefit ALS TDI, and I hope you’ll join me by registering here. If you’re unable to attend, please consider making a tax-deductible and secure contribution to advance vital scientific research in memory of my dad at www.dicksdevotees.org/donate.
I would greatly appreciate your generosity, support, and kindness.