Hi everyone,
I’ve taken time before sharing this because I wanted to approach it thoughtfully and on my own terms.
Over the past year, I’ve been under evaluation at major neuromuscular centers for a serious and ongoing condition that has progressively impacted my mobility and daily function. While there are working diagnoses being considered, my case has not been fully finalized.
At this stage, my care team has recommended a trial of IVIg (intravenous immunoglobulin). This is not just a treatment attempt—it is a critical diagnostic step to determine whether there is an immune-mediated component to what I am experiencing.
Recently, a leading ALS clinical research center reviewing my case confirmed that they are unable to proceed with clinical trial consideration until IVIg results are obtained, as they want to ensure I receive the correct and most appropriate treatment first.
At this time, my insurance has denied coverage for IVIg, and I have an Independent Medical Review (IMR) underway with the state of California. However, the timeline and outcome are uncertain, and this step is time-sensitive.
The cost of treatment is significant.
The initial loading dose alone is approximately $18,000, followed by $9,000 every three weeks for continued treatment.
At minimum, I am hoping to raise funds to cover the first month of treatment (approximately $27,000) so I can begin this process while continuing to pursue insurance approval for the full course recommended by my doctor.
All funds raised will be used exclusively for IVIg treatment and related medical costs. A dedicated account has been established for transparency.
Because of that, I am exploring all options to access this treatment as soon as possible.
With the encouragement of close friends, I am allowing support during this time. If you feel led to contribute toward treatment or help share my story, I am deeply grateful.
More than anything, I ask for your respect, your prayers, and your understanding as I navigate this privately but honestly.
With love,
Charise