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All Hands on Deck for Bronwen

$51,035 of $50,000 goal

Raised by 424 people in 12 months
Created April 25, 2018

January 2019 (see update #20 for full post):

Thank you to everyone who helped us to reach our initial fundraising goal of $50,000.  In eight months, hundreds of people, some of whom have never even met Bronwen, stepped up and helped this one-of-a-kind person and her family meet urgent needs. 

We will likely have to raise more funds.  More on that to come.  For now, please know that your generosity has helped to pay for the following so far:

- installing a new, wheelchair accessible bathroom
- a wheelchair accessible van
- a Sleep Number bed, so that Bronwen can sleep more comfortably
- a Tobii eye gaze system
- lots of caregiver hours

Your donations have provided invaluable tools for Bronwen to continue to live with ALS. The reach of your generosity is immeasurable, but I hope that the above list allows you to imagine some concrete ways that you have helped Bronwen since the initiation of this fundraiser.

Thank you!
Kassie

_________________________________________

Background Story (April 2018):


Dear Friends, 

On December 19, 2017, Bronwen Zwicker learned that she had amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease).

 
ALS is a disease that affects the nerve cells, or neurons, that control voluntary muscle movement.  Voluntary muscles create movements that include chewing, walking and talking.  The disease disrupts the motor neurons that the brain uses to communicate with the rest of the body, causing them to degenerate and eventually die.  This means that the brain is no longer able to send messages to the muscles.  When the muscles lose function, they become stiff, twitch, weaken, and atrophy. 

The disease is comprehensive, eventually affecting all voluntary muscles in the body, and inhibiting the affected person's ability to speak, eat, move, and breathe. 

There is no cure for ALS.  So far, there has been no effective treatment to halt or reverse the progression of the disease.  Three to five years is the amount of time that the majority of people who are diagnosed with ALS have to live.  There are exceptions, with some living ten or more years from when symptoms first appear. 

***

So far, you have been reading a general overview of ALS.  There are sentences here that skip light years ahead of Bronwen's current everyday experience.  To place commas between words as heavy with meaning as "speak," "eat," "move," and "breathe," as a way of describing all of the vital actions that ALS effectively ends, feels like an insult, a bludgeoning of the nuances that are packed into the very unique experience of being Bronwen Zwicker.  

What I am trying to describe is actually impossible to articulate.  I am trying to describe the indescribable.  Bear with me.  I love her, and this hurts.  

***

When she was still a child, Bronwen's voice was already so powerful that she was asked to sing lead in a church play.  The congregants who saw her perform thought that she had been hired as a ringer to sing the part.  If you go to the Zwickers' house today and sit on the back porch as the sun is going down, you can still hear that voice, feel it as it reverberates through your entire body and through the lucky air of Richmond, and understand why those congregants thought that they were listening to a trained professional so many years ago.  But singing for Bronwen is more difficult now.  ALS is already affecting the muscles that are required to make those otherworldly sounds.  Something that has always been second nature to Bronwen--such powerful sounds from such a small person!-- has turned into a physical challenge, and it will continue to grow more challenging.  Every day is packed with profound differences from the day before.  

There are not enough words to fit on a website that could adequately describe Bronwen Zwicker herself, nor the many changes she has already experienced in the few months since receiving her diagnosis.  What is of utmost importance is to understand that the range of what is needed to facilitate her new everyday--with the realization that this everyday is always changing as the ALS progresses--means that a substantial amount of funding will be needed for Bronwen to be a person living in the United States with ALS.  Given the costs the Zwicker family has already incurred and the unpredictability of the disease itself, there is no entirely accurate way to pinpoint a dollar amount for funds needed.  Safe to say the amount is high, and it will continue to grow higher.  There may be a lot of uncertainty right now, but one thing that is without a doubt is that Bronwen and her family should not have to go broke as a result of ALS.

This is where you can help.   

Bronwen and her husband, Stephen Martineau, have moved in with Bronwen's parents, Bob and Dianne Zwicker.  They will need to make modifications to their home so that Bronwen can live as comfortably as possible.  Contractors have estimated that the cost for an accessible bathroom alone will be upwards of $30,000.  The modifications are not covered by health insurance. 

With assistance from friends and family, Bronwen has begun traveling to Baltimore to participate in weekly clinical trials at Johns Hopkins.  Right now she is paying out-of-pocket for travel and overnight lodging.  These costs will continue to add up as she must participate every three weeks in a trial that lasts a total of twenty-four weeks. 

These are just some of the changes that have happened in four months.  Beyond hospital bills, home modifications, and the costs of traveling for clinical trials, there are myriad expenses that could pile up, but could potentially be covered if enough funds can be raised, including: 

- technology to help with communication and other activities 
- a power wheelchair and accessibility ramps 
- adaptable clothing and footwear 
- nursing and personal care
- complimentary treatments such as massage and acupuncture 


So let's get these donations going! 

Spread the word.  Share and re-share.  Any gift amount will help. 


Thank you.


*Note: All donations go to a special needs trust for Bronwen.
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Dear Friends,

Today is Bronwen's birthday. She has never been one to make a big fuss about it, but I sure am glad she was born. Send her some love. Better yet, if you are in the Richmond area, stop by for a visit. Spend some time. Spend lots of time. There is nothing like the physical presence of a caring friend.

With that, I would like to thank you all, again, for helping us to reach our initial fundraising goal of $50,000. In eight months, hundreds of people, some of whom have never even met Bronwen, stepped up and helped this one-of-a-kind person and her family meet urgent needs. You have provided some security for a person living with an unfathomably demanding disease. You have changed the reality for someone living with a disease that, even though it is diagnosed every 90 minutes, there is still no effective treatment, nor cure. You have improved the quality of life for a person who means so much to so many. I hope you can let that sit with you, let it fill your heart, let your kindness continue to reverberate out into the world.

We will likely have to raise more funds in the coming year. More on that later. For now, I would like to share what your generosity has helped to fund since All Hands on Deck for Bronwen came to be.

Your donations have helped to pay for:
- installing a new, wheelchair accessible bathroom
- a wheelchair accessible van
- a Sleep Number bed, so that Bronwen can sleep more comfortably
- a Tobii eye gaze system (what is a Tobii eye gaze system you ask? Check out this explanatory video. It's incredible. https://www.youtube.com/watch?v=Y7_f-pR8SBY)
- lots of caregiver hours

In the last eight months, your gifts have provided invaluable tools for Bronwen to continue to live with ALS. The reach of your generosity is immeasurable, but I hope the above list allows you to imagine some concrete ways that you have helped Bronwen this year.

Thank you!
Hope 2019 is being kind to everyone so far.
Kassie
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Dear Friends,

The GoFundMe for Bronwen has reached its initial fundraising goal of $50k! In less than nine months and with more than 400 donations, a community of people came together to help a very special person live with an incredibly expensive illness. So much more to say, and I will be back in the coming weeks to attempt to say it, but for now I wanted to take a moment to thank you all for your support, and for helping us reach this threshold.

Wishing you and yours all the best in the New Year,
Kassie
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Hi Everyone,

I wanted to take a moment to thank everyone again for coming out for Bronniefest a couple of weeks ago. Just to recap once more, we were able to raise nearly $14,000 for Bronwen and her family with the live fundraiser. These funds will be a great help to the Zwickers as they continue to look into home care options for Bronwen.

We are still inching ever closer to our initial goal of $50k on the Gofundme. On this last day of 2018, if you are able, please consider closing the year with a donation.

The current cost per hour for Bronwen to have a caregiver is $15-$25. The current goal is to hire caregivers for 40-50 hours per week, however these needs are likely to increase over time. More updates to come in the New Year, but our priority will continue to be focused on raising funds to pay for this much needed service.

As challenging as 2018 has been, I take solace knowing that you cannot put a price on the value of community. Thank you all for reminding me of that again and again, at Bronniefest and more times than I can count in this last year of profound change.

Wishing everyone a New Year of love and wonder.
Kassie

P.S. Please enjoy the accompanying pic of Bronwen and Stephen's dog, Ziggy, as she sits with Tim and a teddy bear.
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Thank you to everyone who came out for Bronniefest last night, and to everyone who was there in spirit, bolstering us from afar. Your outpouring of support brought in about $14,000 for our dear Bronwen, and that doesn't even include all the donations that came through the GoFundMe in the weeks leading up to the event-- to give an idea, last night combined with just the last seven days of GoFundMe donations alone is about $19,000!

Thank you to our sponsors, to the dozens of businesses who donated gift certificates and other goods for raffle, to the artists who donated so many beautiful pieces for auction, to the performers who continued to draw people into the room throughout the evening with their magnetism, to EVERYONE who came together from the Richmond community and beyond to show some love for Bronwen Zwicker.

Most important of all, thank you to Bronwen Zwicker for existing on this earth. We love you very much.



Accompanying image: "Gathering," a portrait of Bronwen, by Allyson Mellberg Taylor
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$51,035 of $50,000 goal

Raised by 424 people in 12 months
Created April 25, 2018
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