Creston Nelson knows health care. Now, she needs it more than ever.
Monday is the final day of a four-day auction established to raise funds for Nelson, a Miami native turned 40-year Tallahassee resident who was a health care reporter for years. In 1993, she self-published The Florida Caregivers Handbook, a first-of-its-kind guide to help those navigating complex health care delivery and financing systems.
More than 30 years later Nelson, who now serves as a member of Florida Senate staff finds herself once again taking a deep dive into the health care system, this time as a patient living with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease).
Even with insurance, Nelson and her family are facing extraordinary out-of-pocket costs for medical care and 24-hour caregiving as she continues to embrace life, enjoy time with family and friends, and work, albeit on an abbreviated schedule.
To help offset those costs, which have soared to more than $20,000 a month, Nelson’s friends and family launched the art auction, including donated art that will be sold to the highest bidder. The virtual auction can be accessed here. Bidding closes at 9 p.m.
Included in the auction are pieces from renowned artists Scott Jacobs, Dominic Pangborn, Samuel Prout, Downe Burns, and Danny O’Driscoll. Scores of Florida artists who know and love Nelson and her family also have created and donated works for the auction.
And if art isn’t your thing, you can simply donate to the cause.
Nelson’s ALS journey began in August of 2024 when she noticed feelings of imbalance in her left leg while aboard a cruise ship sailing through Icelandic waters. Upon her return, she began seeking answers from area physicians and specialists, but she got none.
Nelson, known for her tenacity, continued to push and in what she describes as divine intervention landed an appointment at the Mayo Clinic in October. She was diagnosed with ALS at a follow-up appointment in January. The fatal disease affects the neurons of the spinal cord leading to progressive weakness, atrophy of the muscles, ultimately leaving its patients motionless and speechless.
But as her many friends can attest, no one has ever been able to silence Nelson. Lou Gehrig’s disease won’t be the exception.
“ALS is a ruthless killer,” Nelson said. “But families are the collateral damage. PALS (a term used to describe people living with ALS) who can no longer work lose their livelihoods and their insurance coverage. Family members quit their jobs to care for their loved ones. People lose their homes and their dignity. This is unacceptable.”
Nelson has taken to social media to post about ALS, including what she describes as some fun facts she has discovered on this journey. Military service members are 10 times more likely to receive an ALS diagnosis than the general population and the VA has recognized ALS as a service-related disease, which means veterans receive support that the general population does not.
“I would argue that the benefits extended to veterans should be the absolute minimum of benefits available to all PALS. Veterans and non-veterans alike deserve better,” Nelson said.
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