Brian and the Cleary Family
An annual physical in the Spring of 2022 kicked off a nearly 18-month process that ultimately led to my ALS diagnosis.
Over those 18 months, occasional muscle cramps turned into frequent muscle cramps and were soon followed by balance issues, but my neurologist was in no rush to give me a diagnosis of any kind, let alone ALS, so when I was scheduled for an EMG in September of 2023, I figured it was just another step in the process of ruling out all possible issues…
Just prior to my diagnosis, I had moved in with my (now) wife, Violeta, and her two daughters, Olive and Violet, and we just added a new puppy (Bruce) to our family. To say we were on cloud nine would be an understatement!
These past few years have been incredibly difficult, but I consider myself to be fortunate in an unfortunate situation. I’ve connected with some of the best doctors and non-profits in the country, and more importantly, I’ve continued to celebrate some truly special moments with Violeta, Olive, and Violet!
It took me some time to share this part of my life more openly, but I’ve realized that the support of family and friends makes a big difference – not just for me, but for Violeta and the girls, as well.
We’re doing our best to adjust to the daily changes and continuing to prepare for the challenging road ahead. We’re truly grateful for all the support we have and hope to have!
– Brian
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 