Father, Son, Husband, Uncle, Brother, Friend, Athlete, Spinning Instructor, Drummer, Sales Director, and now, in a devastating turn of fate, ALS patient.
Early last fall, Don started to feel things were changing with his body. He started to become weaker in doing some physical activities and he began developing a limp with his left leg. After struggling through this and questioning what was going on, visits to medical specialists in October confirmed that he was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).
As you can imagine this has been devastating for Don and his family. With a passion for drumming in his beloved band “Crowe” and a love for sipping Jack Daniels with his close friends, Don can no longer do the basic things he loves. This includes providing the customary help a father and husband does to support his wife Carolyn and daughters Katie, Lauren and Jocelyn.
ALS is a dreadful disease. It’s an aggressive, motor neuron illness that gradually causes paralysis, making even the simplest things (walking, eating, swallowing, breathing) difficult and ultimately impossible. But there IS hope. There are many clinical trials in progress and several new, promising drugs being developed.
The Medical Opportunity
While this is an agonizing turn of events for Don and the family, Don remains positive of the medical opportunities that are now available and wants to do everything in his power to beat
the horrific odds of surviving more than the average 2.5 years. While current approved ALS treatments are marginally effective, there are new treatments that have shown tremendous
promise in clinical trials in dramatically slowing, stopping, and even reversing symptoms in some patients. These new medicines could be a long-term bridge to even better therapies and
perhaps a cure. And Don is a good candidate for these ALS trials as he is less progressed and still has motor neuron functions. Many in the medical community believe that these new treatments are at a critical turning point and Don’s doctors are hopeful these medications will offer some reprieve.
However, these treatments are exorbitantly expensive and can cost a significant amount of dollars to access. While we live in a country with socialized medicine, our system does not
support these trials nor the adequate care and support needed by ALS patients for treatments, long-term care and equipment.
Don and Carolyn are quickly becoming financially stretched beyond their means.
Supporting an individual through ALS is prohibitively expensive and to have a fighting chance, they will need hundreds of thousands of dollars for this immediate 6-10 month time period. Simultaneously their income is now stunted, with Don on disability leave and Carolyn shifting to work
part-time to support Don’s care. As you can imagine, with supporting three daughters in school, this creates a very heavy burden.
We need your help so Don can win this fight against ALS
With the support of his friends and family, we’ve created a GoFundMe Campaign "REILLY HEALS" to help raise the funds required to support Don and Carolyn as they face not only this devastating diagnosis, but the massive financial burden that comes with it. From renovating their home so Don can safely live there for as long as possible, to purchasing specialized equipment he needs, to accessing current breakthrough medications, the costs are enormous. That’s where your donations come in.
Where will the funds go to?
The need is immediate, as the equipment list is long including walkers, wheelchairs, scooters, ramps, patient transfer lifts, ceiling track systems, straight stair lifts, hospital beds and basic
communication devices. In addition to equipment and caregiving needs Don also needs resources to access the new treatments and trials that are showing encouraging results. In the unlikely event that there are excess funds after these urgent priorities are met, the extra funds will be placed into a Trust Fund to be divided amongst Don's three daughters and Carolyn.
We need to raise $450,000.
Please help Don and Carolyn so they do not have to add an unmanageable financial burden to the heavy one they are already facing. Every cent of this campaign will go towards supporting Don and Carolyn as they bravely face this journey, so please pass this on to your network, any other potential donors or foundations you can think of. Every contact will make a big difference for Don.
NOTE- When donating there is a "Tip GoFundme Services" tab which defaults to 12%, this can be manually changed to 0 (or whatever you choose).
For regular updates on Don's journey please follow this link to his site on CaringBridge.
From the bottom of our hearts, thank you for supporting REILLY HEALS.
- Ron Jones
- Meghan Kennedy
- JASON & CANDACE ALIKAKOS
- Kathryn Snider
Organizer and beneficiary
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