It’s “Find Your Voice” Friday!
Last year was hard on me for various reasons but one day I decided I have a voice and I need to continue to use it, even if that voice was sharing my opinion and ALSP expertise from real life experiences. After all, that is why I started this foundation. My job is to advocate for those affected by ALSP and I needed to keep pushing through the barriers and injustices. And that is how our 2023 campaign was born, “Find Your Voice.”
I fight almost daily on behalf of the ALSP community, behind the scenes, because this community deserves it. Every battle, every story, every word, either good or bad are critically important.
In 2023, “Find Your Voice.”
The article below needed to be printed, and now it needs to be shared and reshared around the globe. What Kim, Jeffrey and this family are experiencing is not an isolated situation. ALSP patients are experiencing the lack of care and access to therapies after a diagnosis, when they need therapies and placement in a skilled nursing facility after an experimental stem cell transplant using bone marrow (HSCT) and at the end of life.
This will continue to happen as we use experimental treatments, navigate new clinical trials, and diagnose more patients with ALSP. If we can figure out how to extend a patient’s life and are willing to try using HSCT, a drug or gene therapy we also need to start thinking about the long-term plans of these patients.
ALSP patients on average are diagnosed at 43 years old, they are young, and our system is not prepared to care for a patient who could live another 40 years with dementia and mobility issues. We know they will progress during the HSCT procedure before the disease progression stops. We know if they are considered for a drug trial they will progress until that drug starts working. If we have the means to keep them alive, we better figure out how to take care of them with quality of life for the long term.
It is tragic how our worlds collided, but I am so proud and honored to have Kim on the SHF Board, call her my friend and I know her family and others in this situation are cheering her on for being a fierce fighter for the quality of life that ALSP patients deserve like her brother Jeffrey. “Find Your Voice” like Kim and advocate for ALSP.
You do not want to miss out on reading this article: https://www.recorderonline.com/news/roadblocks-to-care-for-somebody-with-terminal-brain-disorder/article_074baa3c-a7d5-11ed-bf90-17e02f98881c.html