Help me start my non-profit, iMS!
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The Story
This is Bonnie's story. And hopefully it will be someone else's too.
My mother-in-law, Bonnie Soria, has Multiple Sclerosis. Multiple Sclerosis is a disease whereby the immune system attacks the protective sheath (myelin) that covers nerve fibers, causing communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged. Bonnie has had MS symptoms since her late teens, but was officially diagnosed soon after the birth of her second child, my sister-in-law Heather. Since then, her physical decline has been a slow progression. She spent many years transitioning from walking with a cane, to a walker, to the use of a wheelchair, all while trying to maintain her duties as a wife and mother. 8 years ago, her legs eventually succumbed to the strength of the disease and she became permanently bed-bound. Since then, Bonnie has lost all mobility except for limited use of her right arm.
When I met Bonnie 6 years ago, her day-to-day was extremely limited, to say the least. Her window to the world was All My Children, Dr. Phil, local news and telephone calls from her adoptive mother, best friend and children. Her everyday reality consists of chronic pain, complete dependency, failing bodily functions and isolating guilt of missing out on her children's lives. She was disconnected, and the world was changing and evolving without her. I was determined to make it better.
It wasn’t until 2 years after I began dating Erik that it occurred to me how I was going to do this – Bonnie needed an iPad. I was keenly aware of what I was up against, though – families of the chronically ill are often exhausted from years of trying everything to make their loved ones’ life easier and would much prefer to maintain the status quo. Erik made several valid points as to why this surely wouldn’t work – technological ineptitude (Bonnie hadn’t touched a computer since the 90s), her extremely limited arm mobility and grip strength, and a general apprehension towards anything non-routine. But, after weeks of convincing and gentle reassurances, Erik agreed to let me try.
Luckily, I was able to find a company that made adjustable iPad floor-stands for hospital beds, so that eliminated the concern over her inability to hold it. I then bought a stylus pen so that it was easier for Bonnie to make contact with the screen. The last step was teaching Bonnie how to use it. Several “learning sessions” and a Facebook account later, Bonnie was navigating the iPad like a pro.
Since then, Bonnie is on the iPad from morning to night, taking breaks only for nurse visits and meals. Facebook has allowed her to reconnect and stay in touch with troves of her friends that she had lost touch with due to her illness, whether that’s through constant messaging or seeing their photos. It also allows her to stay up to speed with her children’s lives – vacation pictures, parties, posts, she sees and “likes” it all! She reads books on the kindle app, browses the latest fashions online, and is a Netflix queen. But most importantly, every morning for the last 4 years, her and Erik have exchanged their daily email, filling each other’s inboxes with their lives’ details, a virtual album that Erik will treasure for the rest of his life.
The iPad has also had physical benefits. First, it has allowed Bonnie to maintain mobility in her right arm. Because her arm is constantly engaged when using the iPad, the muscles have not atrophied like the majority her body. The iPad has also improved her cognitive function. We’ve all noticed that Bonnie is sharper, can participate more meanigfully in discussions of current events and has a wider range of interests and overall vocabulary words.
In short, the iPad gave Bonnie some of her life back. It transports her away from the reality of her condition and gives her purpose. It is her window and connection to the world, and we are eternally grateful that this type of technology exists!
The Plan - iMS
Watching the iPad change Bonnie's life has inspired me to start a non-profit, which will be appropriately named iMS, to be able to do this for others. Whether struggling with MS or some other terminal disease, people that are chronically ill and confined to a bed are often cut-off from the rest of the world, and an iPad can change that. However, the cost of an iPad is often prohibitive and not within reach. iMS's mission will be to raise money to purchase, donate and setup iPads, associated equipment and therapeutic apps for these people.
Bike MS + GoFundMe
Starting a non-profit is a costly endeavor, from legal and accounting fees to building an impactful website. Too many incredible non-profits fail in their infancy because of the financial burden on their founders. I have started this GoFundMe campaign to help fund those expenses.
By contributing to my GoFundMe campaign, you have the chance to be part of the start of something great. Any donation via GoFundMe will be meaningful in helping me found iMS. I would also be incredibly grateful if you could spread the word by sharing my campaign with those in your network.
To earn your contribution and bring awareness to the MS community, I along with Erik, his sister and several friends have formed a team that will bike 30 miles on October 23rd in the 2016 Annual NYC Bike MS ride sponsored by the National MS Society. Together, as Team iMS, we will ride in honor of Bonnie. Check out our team page at: http://main.nationalmssociety.org/goto/TeamiMS
How The Money Will Be Used
Any funds received via GoFundMe will be used solely to fund the costs associated with founding and launching iMS. This includes legal fees associated with iMs's incorproation and 501(c)(3) tax application, consulting fees, website build, marketing and branding.
Anything left-over after start-up expenses will be used to fund iMS's first round of iPad and equipment donations.
About Me and the Soria Family
I am a 28-year old attorney living and working in finance in Bermuda with my husband Erik Soria. Bonnie is Erik's mother. Bonnie's husband is Ricardo and her daughter is Heather.
Thank You!!
Starting iMS will be the silver lining to what has been a tragedy for the Soria family. We will keep you posted at every milestone. From the bottom of our hearts, Bonnie, Ricardo, Erik, Heather and I thank you for your contribution that will help make iMS a reality and change lives.
This is Bonnie's story. And hopefully it will be someone else's too.
My mother-in-law, Bonnie Soria, has Multiple Sclerosis. Multiple Sclerosis is a disease whereby the immune system attacks the protective sheath (myelin) that covers nerve fibers, causing communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged. Bonnie has had MS symptoms since her late teens, but was officially diagnosed soon after the birth of her second child, my sister-in-law Heather. Since then, her physical decline has been a slow progression. She spent many years transitioning from walking with a cane, to a walker, to the use of a wheelchair, all while trying to maintain her duties as a wife and mother. 8 years ago, her legs eventually succumbed to the strength of the disease and she became permanently bed-bound. Since then, Bonnie has lost all mobility except for limited use of her right arm.
When I met Bonnie 6 years ago, her day-to-day was extremely limited, to say the least. Her window to the world was All My Children, Dr. Phil, local news and telephone calls from her adoptive mother, best friend and children. Her everyday reality consists of chronic pain, complete dependency, failing bodily functions and isolating guilt of missing out on her children's lives. She was disconnected, and the world was changing and evolving without her. I was determined to make it better.
It wasn’t until 2 years after I began dating Erik that it occurred to me how I was going to do this – Bonnie needed an iPad. I was keenly aware of what I was up against, though – families of the chronically ill are often exhausted from years of trying everything to make their loved ones’ life easier and would much prefer to maintain the status quo. Erik made several valid points as to why this surely wouldn’t work – technological ineptitude (Bonnie hadn’t touched a computer since the 90s), her extremely limited arm mobility and grip strength, and a general apprehension towards anything non-routine. But, after weeks of convincing and gentle reassurances, Erik agreed to let me try.
Luckily, I was able to find a company that made adjustable iPad floor-stands for hospital beds, so that eliminated the concern over her inability to hold it. I then bought a stylus pen so that it was easier for Bonnie to make contact with the screen. The last step was teaching Bonnie how to use it. Several “learning sessions” and a Facebook account later, Bonnie was navigating the iPad like a pro.
Since then, Bonnie is on the iPad from morning to night, taking breaks only for nurse visits and meals. Facebook has allowed her to reconnect and stay in touch with troves of her friends that she had lost touch with due to her illness, whether that’s through constant messaging or seeing their photos. It also allows her to stay up to speed with her children’s lives – vacation pictures, parties, posts, she sees and “likes” it all! She reads books on the kindle app, browses the latest fashions online, and is a Netflix queen. But most importantly, every morning for the last 4 years, her and Erik have exchanged their daily email, filling each other’s inboxes with their lives’ details, a virtual album that Erik will treasure for the rest of his life.
The iPad has also had physical benefits. First, it has allowed Bonnie to maintain mobility in her right arm. Because her arm is constantly engaged when using the iPad, the muscles have not atrophied like the majority her body. The iPad has also improved her cognitive function. We’ve all noticed that Bonnie is sharper, can participate more meanigfully in discussions of current events and has a wider range of interests and overall vocabulary words.
In short, the iPad gave Bonnie some of her life back. It transports her away from the reality of her condition and gives her purpose. It is her window and connection to the world, and we are eternally grateful that this type of technology exists!
The Plan - iMS
Watching the iPad change Bonnie's life has inspired me to start a non-profit, which will be appropriately named iMS, to be able to do this for others. Whether struggling with MS or some other terminal disease, people that are chronically ill and confined to a bed are often cut-off from the rest of the world, and an iPad can change that. However, the cost of an iPad is often prohibitive and not within reach. iMS's mission will be to raise money to purchase, donate and setup iPads, associated equipment and therapeutic apps for these people.
Bike MS + GoFundMe
Starting a non-profit is a costly endeavor, from legal and accounting fees to building an impactful website. Too many incredible non-profits fail in their infancy because of the financial burden on their founders. I have started this GoFundMe campaign to help fund those expenses.
By contributing to my GoFundMe campaign, you have the chance to be part of the start of something great. Any donation via GoFundMe will be meaningful in helping me found iMS. I would also be incredibly grateful if you could spread the word by sharing my campaign with those in your network.
To earn your contribution and bring awareness to the MS community, I along with Erik, his sister and several friends have formed a team that will bike 30 miles on October 23rd in the 2016 Annual NYC Bike MS ride sponsored by the National MS Society. Together, as Team iMS, we will ride in honor of Bonnie. Check out our team page at: http://main.nationalmssociety.org/goto/TeamiMS
How The Money Will Be Used
Any funds received via GoFundMe will be used solely to fund the costs associated with founding and launching iMS. This includes legal fees associated with iMs's incorproation and 501(c)(3) tax application, consulting fees, website build, marketing and branding.
Anything left-over after start-up expenses will be used to fund iMS's first round of iPad and equipment donations.
About Me and the Soria Family
I am a 28-year old attorney living and working in finance in Bermuda with my husband Erik Soria. Bonnie is Erik's mother. Bonnie's husband is Ricardo and her daughter is Heather.
Thank You!!
Starting iMS will be the silver lining to what has been a tragedy for the Soria family. We will keep you posted at every milestone. From the bottom of our hearts, Bonnie, Ricardo, Erik, Heather and I thank you for your contribution that will help make iMS a reality and change lives.
Organizer
Chiara Pellus Soria
Organizer
New York, NY
