Brian and the Cleary Family
In September 2023, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS)… also known as Lou Gehrig’s Disease. It came after a few months of puzzling symptoms – cramps, strange pains, and a bit of balance issues. I knew something was off, and I knew I needed to get to the bottom of it. That exploration eventually led me to a neurologist. While my mind was contemplating causes, nothing could have prepared me for the diagnosis I received just over a year ago.
At that time, I’d recently moved in with Violeta and her two amazing daughters, Olive and Violet. Life was already full of wonderful changes – a new family, a new home, a new dog, even a relatively new job. Then, all of a sudden, I was contemplating a different kind of change – one that I knew would challenge me and my family in ways we’d never been challenged before.
I’m not going to lie, while there have been many incredible moments over the last year, this has been the hardest year of my life, and I’m sure the coming years will test me and my family even further. But over that year, I have connected with some of the best doctors, researchers, and non-profit organizations in the country, all dedicated to eradicating ALS. This disease is incredibly daunting, but the pace of innovation is extraordinary. Violeta and I are doing our best to learn, connect, and prepare in any way we can.
I’ve been slow to share our story widely, as we’ve come to grips with it. But I know that the support of family and friends will make all the difference for Violeta, the girls, and me.
There are daily physical, mental and emotional frustrations, to be sure, but surrounding ourselves with love, and support, and hope is the only way forward.
Brian, October 2024
Donations
Many people have asked how they can contribute to Brian and his family directly. We have partnered with the 501(c)(3) ZiggyStrong to allow you to make donations that are not only 100% routed to Brian but are also tax deductible and eligible for employer matching donations!
ZiggyStrong was founded by one of Brian’s Denison classmates, Chelsea Mikula, and her husband Jason after his battle with cancer so they could support others in need. They’ve graciously extended their non-profit vehicle for Brian and his family.
In addition to helping offset the incremental costs of living with ALS, contributions will go towards Brian’s participation in advanced and experimental technology, equipment and treatments. It is Brian’s goal to live a long, spirited and engaged life. His commitment to his family, friends, education, and the ALS community will not waver.
The unfortunate reality is that Brian and his family will face extraordinary medical and incidental expenses as a result of this diagnosis. In the coming years, estimates for medical costs alone range from $200,000-$300,000/year, many of which will not be covered by insurance.
Additional expenses may include:
- Purchasing a wheelchair and lift
- A specialized van/SUV to accommodate the wheelchair
- Participation in long-term clinical trials (typically 2 years)
- Computer eye gaze technology allowing Brian (who, like all ALS patients, will retain the use of his eye muscles) to continue interacting with family, friends, and work
- In-home care not covered by insurance
- Other home modifications
No one knows how long Brian will be able to fight this disease but we know he is scrappy and determined, so we are all assuming he’ll battle it way longer than the average. That would be a tremendous gift, but one likely to result in a financial burden on him and his family.
Donations can be made via check or venmo directly to the organization with a memo designating them for “Cleary”. These are directly deposited into a fund for Brian and his family’s benefit.
Venmo @ziggystrong
Checks may be made out to ZiggyStrong with “Cleary” in the memo and sent to: 5034 Forestland Court, Brunswick Ohio 44212
The EIN is 92-0946777
Wondering if your company provides matching? Check here.
If you have any questions reach out to Brian’s brother, Tim, at cleary.tim@gmail.com or 917-435-7696
Other Organizations We Endorse
If you are interested in supporting ALS-specific charitable / non-profit orgs, we think these three are especially worth your attention.
ALS-TDI
Founded by the ALS community and fueled by your support – the ALS Therapy Development Institute (ALS TDI) is the world’s largest drug discovery lab focused solely on ending ALS.
Project ALS
Project ALS identifies and funds the most promising scientific research that will lead to the first effective treatments and a cure for ALS. They recruit the world’s best scientists and doctors to work together—rationally and aggressively—to develop a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.
Project ALS is the world’s first ALS organization to focus exclusively on research. They have raised over $110 million in 23 years to fund ALS research programs at leading academic institutions including Harvard University, Columbia University, UCSF, and the Salk Institute, and have made significant progress toward a cure for ALS.
Compassionate Care ALS
Compassionate Care ALS (CCALS) is a nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited. CCALS offers an innovative approach to delivering support and services to our clients, which we tailor to the needs of each individual and their support network.
Brian's ALS Journey 