OUR FIGHT FOR HER FIGHT AGAINST ALS
Donation protected
My mother, Jennifer Ann Perna, 59 years old, was diagnosed with ALS (Lou Gehrig’s Disease) in late fall of 2016. Our family was stunned to learn, after months of grueling rule-out diagnostic testing, that she had without-a-doubt developed this fatal neuro-muscular degenerative disease. We were devastated with the gravity of this revelation and are still bereft in our efforts to help our mother preserve any quality of life she can.
In the past 10 months, her condition has deteriorated from walking with a cane and taking extra precaution while climbing up and down the stairs, to being wheelchair bound, unable to use stairs and having difficulty transitioning from her bed to her wheelchair. Even with what the medical professionals called an “early stage diagnosis” of this terminal disease, her progression has been rapid and significant.
If you know little or nothing about ALS (Amyotrophic Lateral Sclerosis), suffice it to say that there is currently no known cause or cure for this disease. Nerve cells and muscular tissue gradually deteriorate, eventually resulting in death, typically within 3-5 years of diagnosis. We were hoping that with an “early stage diagnosis” that our family would have more time with my mother. Considering the changes in the past 10 months, however, we have our doubts. Yet there is hope.
Radicava, a transfusion-based medical treatment that has undergone clinical trials in Japan since 2015, has demonstrated findings of reducing the progression of ALS symptoms by up to 30% in test patients. These findings have been replicated and deemed valid by the FDA, resulting in their recent approval of the treatment in the US. This news, although amazing to hear, also comes with the reality that accompanies any newly approved treatment in the US: Insurance contribution is partial, at best.
For our mother, her co-insurance for the treatment will be approximately $4000.00 each month, which will be ongoing for the remainder of her life.
Jennifer has been claiming disability for the past 2.5 years due to the progression of what we now know is ALS and as her income is minimal, our family has been giving everything we can. To date we’ve contributed toward her medical expenses, the installation of a stair-rail chair, explored homeopathic routes, and other treatments to address symptoms of the progression. We will continue to contribute everything we can to cover our mother’s treatments. We want her to have the best quality of life she can have, while she can have it. We do know, however that with a monthly $4000 medical bill, we will be coming up short.
We know we need help. It isn’t easy to write this request for donations, but here we are. We love our mother and will continue to do everything and anything we can for her. Please share with others. Please donate $10. Please learn more about ALS: http://www.alsa.org/research/radicava/radicava-frequently-asked-questions.html
We are thankful for your time, grateful for your prayers, and humbly accept any donations you may consider.
From the bottom of our hearts,
Jarrett, Danny, Michelle & Tomassino
Sent from my iPhone
In the past 10 months, her condition has deteriorated from walking with a cane and taking extra precaution while climbing up and down the stairs, to being wheelchair bound, unable to use stairs and having difficulty transitioning from her bed to her wheelchair. Even with what the medical professionals called an “early stage diagnosis” of this terminal disease, her progression has been rapid and significant.
If you know little or nothing about ALS (Amyotrophic Lateral Sclerosis), suffice it to say that there is currently no known cause or cure for this disease. Nerve cells and muscular tissue gradually deteriorate, eventually resulting in death, typically within 3-5 years of diagnosis. We were hoping that with an “early stage diagnosis” that our family would have more time with my mother. Considering the changes in the past 10 months, however, we have our doubts. Yet there is hope.
Radicava, a transfusion-based medical treatment that has undergone clinical trials in Japan since 2015, has demonstrated findings of reducing the progression of ALS symptoms by up to 30% in test patients. These findings have been replicated and deemed valid by the FDA, resulting in their recent approval of the treatment in the US. This news, although amazing to hear, also comes with the reality that accompanies any newly approved treatment in the US: Insurance contribution is partial, at best.
For our mother, her co-insurance for the treatment will be approximately $4000.00 each month, which will be ongoing for the remainder of her life.
Jennifer has been claiming disability for the past 2.5 years due to the progression of what we now know is ALS and as her income is minimal, our family has been giving everything we can. To date we’ve contributed toward her medical expenses, the installation of a stair-rail chair, explored homeopathic routes, and other treatments to address symptoms of the progression. We will continue to contribute everything we can to cover our mother’s treatments. We want her to have the best quality of life she can have, while she can have it. We do know, however that with a monthly $4000 medical bill, we will be coming up short.
We know we need help. It isn’t easy to write this request for donations, but here we are. We love our mother and will continue to do everything and anything we can for her. Please share with others. Please donate $10. Please learn more about ALS: http://www.alsa.org/research/radicava/radicava-frequently-asked-questions.html
We are thankful for your time, grateful for your prayers, and humbly accept any donations you may consider.
From the bottom of our hearts,
Jarrett, Danny, Michelle & Tomassino
Sent from my iPhone
Organizer
Jarrett Coiro
Organizer
Fanwood, NJ
