Julianna (and cat Punk) need your help...
Donation protected
Hey folks, especially you all who know this superstar and unselfish helper/LEMS educator and champion in the LEMS community...hoping we can help her out! Julianna is the most wonderful human being ever and she doesn't want to be a bother or ask for help, but she could really use it. Just became aware of this and hoping we can help her with the support needed to get her to a safe home and allow her to put her hearing aids back in!!! Let's do it TOGETHER (yes, patients and professionals, no matter what medication you are on, women and men, cats and dogs.... :) ) - - and maybe even beat the $3,000 goal so she can get help with moving her stuff and a nice bottle of wine for a new apartment warming present! Thanks all, Dan (see note below from Julianna)
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My name is Julianna, and I have Lambert-Eaton Myasthenic Syndrome, or LEMS. I’ve spent much of my adult life fighting to help raise awareness of my condition, and my journey has been an important piece of why I fight.
I spent eight years in a nursing home and never once felt like a real person there. Three years ago, I was able to secure an apartment of my own. It was great at first, but I simply do not feel safe here anymore. I have been working hard on finding a new, safer place to live where I can feel like my own person and renew my strength to continue fighting for people living with disabilities. I found an apartment in a safer area that includes security coverage recently, but because I have spent so much time without building any credit, I cannot afford to move there without help.
I cannot do much on my own, as I am confined to a wheelchair. I have a caregiver who comes once a day, but they cannot help me with anything related to trying to move somewhere where I will feel safe and like I am able to thrive. I have been without my hearing aids for months now because I just cannot keep up with saving for a move and medical equipment while weathering the other challenges that come my way.
The resources that would normally be there to support me through this are, unfortunately, some of those which have been stretched thinnest during the ongoing COVID-19 crisis. They are not taking on new clients and many of them have run out of funding due to increased demand from the ongoing stress this is putting on people who are at high-risk of this disease.
I am hoping to find help with covering some of these expenses to facilitate my recovery. With $3,000, I could get the hearing aids I need, find help moving, and pay my additional deposit. I could work on improving my mental health and alleviating the stress this situation has been causing me. I hate asking for help, but some people have pushed me to leave my comfort zone and reach out to others in the hope that my years of fighting will be met with support from the community.
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My name is Julianna, and I have Lambert-Eaton Myasthenic Syndrome, or LEMS. I’ve spent much of my adult life fighting to help raise awareness of my condition, and my journey has been an important piece of why I fight.
I spent eight years in a nursing home and never once felt like a real person there. Three years ago, I was able to secure an apartment of my own. It was great at first, but I simply do not feel safe here anymore. I have been working hard on finding a new, safer place to live where I can feel like my own person and renew my strength to continue fighting for people living with disabilities. I found an apartment in a safer area that includes security coverage recently, but because I have spent so much time without building any credit, I cannot afford to move there without help.
I cannot do much on my own, as I am confined to a wheelchair. I have a caregiver who comes once a day, but they cannot help me with anything related to trying to move somewhere where I will feel safe and like I am able to thrive. I have been without my hearing aids for months now because I just cannot keep up with saving for a move and medical equipment while weathering the other challenges that come my way.
The resources that would normally be there to support me through this are, unfortunately, some of those which have been stretched thinnest during the ongoing COVID-19 crisis. They are not taking on new clients and many of them have run out of funding due to increased demand from the ongoing stress this is putting on people who are at high-risk of this disease.
I am hoping to find help with covering some of these expenses to facilitate my recovery. With $3,000, I could get the hearing aids I need, find help moving, and pay my additional deposit. I could work on improving my mental health and alleviating the stress this situation has been causing me. I hate asking for help, but some people have pushed me to leave my comfort zone and reach out to others in the hope that my years of fighting will be met with support from the community.
Organizer and beneficiary
Daniel Brennan
Organizer
Summit, NJ
Julianna Kustelski
Beneficiary