"Cowgirl Up" for Jaci Hermstad

$146,528 of $500,000 goal

Raised by 2,250 people in 3 months
Created April 3, 2019
Fundraising Team

I have a rare form of ALS called FUS p525L mutation. The only other person I knew who had this merciless disease was my identical twin sister, Alex. She was diagnosed at age 11 and I watched her die on Valentine’s Day in 2011.

This past Christmas, I found out I have this relentless form of ALS and my life has already changed so much since that moment. I went from driving my car to using a walker in just 2 months. And now I need a breathing machine when I sleep at night.

Right now, there’s no treatment or cure, but there is a GROUNDBREAKING experimental drug call ASO. 

Time is not on my side. But I have hope. I have one life and I want to fight for it with everything I’ve got. I just need your help!

__


WHERE THE $$ IS GOING:

Researchers are currently working on the groundbreaking experimental drug called “ASO” that could save my life.

This process requires $700,000 and is being designed specifically for my severe form of ALS. It is a new procedure that will be considered a "Compassionate Use" for me.   We have divided the fundraising efforts into 7 phases.  With the money we've raised at my benefit on April 13th in Spencer, IA, we are into phase 2 now! 

My only hope is to be part of this treatment.

Please give if you can TODAY  &  GIVE ME A CHANCE TO LIVE!


COWGIRL UP FOR JACI:  HELP SAVE A LIFE.:  DONATE NOW


Keep updated on my journey by following me on Facebook: http://bit.ly/CowgirlUpforJaciFB
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Thursday, July 11 was Jaci’s 3rd dose of the ASO. It was triple the dose from the first one. It was exactly one month from her first infusion. We have been told not to expect a lot at first and to give it time to work. We will be honest, it is very hard to be patient under the circumstance. We are all trying to be brave and faithful, but it’s still challenging. The doctors still share they are hopeful but because it is still all new and unprecedented it is unclear what the turn out will be. Because they remain hopeful, we will remain to be, too.

We ask for mighty prayers this dose will shoot through Jaci’s body like a rocket and wake all the nerves and motor neurons up showing positive results like no other. We are going to keep believing and trust good things are to come.....we have to. We pray for Jaci’s miracle.

So many people have opened their hearts and have donated thus far approximately $345,000. We are beyond speechless to have so many people that care and are helping us toward our goal. Nonetheless, we will still have roughly an estimated $450,000 that could be more or less to raise yet for continued mandated FDA toxicity testing, not to mention these expenses have been denied by insurance as they classify them as experimental treatment which include, hospital stays, the medical jet flights, other medical related costs, and housing while our stay in New York.

This is a very daunting number especially when it is Jaci's life that is on the line. We were hoping when we got out here to New York that her story would get some national exposure and the remaining funds would prayerfully come. Maybe they still will, but obviously this is weighing heavy on us.

Jaci will also need ongoing treatments of this ASO. It is unsure of how many that will be but in order to keep the bad protein in check, the ASO must be infused for the rest of her life. It is still unclear how often.

As we prepare for the next dose of Jacifusen, we cling to our amazing God to hold Jaci in His arms and breathe new life in those nerves that are sleeping and wake them up!! We thank him for sustaining us each day and know that His love for Jaci and us are bigger than we can imagine!
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Manufacturing is completed, FDA guidelines along with testing yet to conquer. Funding is still desperately needed!
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Ground breaking experimental drug called ASO.

COWGIRL UP FOR JACI:  HELP SAVE A LIFE.:  DONATE NOW

My name is Jaci Hermstad, a 25 year old cowgirl from Spencer, Iowa. 
I have a rare form of childhood onset ALS called FUS P525L.  
It is raging in me like a wildfire.  

Until a couple months ago, my day would start before sunrise and would not end until after sunset. I loved my dream job and had to step down. My love and passion is to ride my horse, Bud and now I’m unable to do his chores or even just sit on him. I can no longer do things that I love such as simply going outside on my own, getting into my truck, walking without assistance, using the restroom without assistance, rolling over in bed. I am scared what will happen next.


ALS is one of the worst diseases in the world, and FUS P525L ALS is one of the most severe, aggressive forms of ALS. I don't need my doctors to tell me how bad it is, because my identical twin sister Alex was stricken with this same disease and I watched her die, at age 17.

WHERE IS YOUR MONEY GOING
Researchers are working on a ground breaking experimental drug called “ASO” that could save my life.
It will take up to $700,000 for the whole process since this is being designed specifically for me for this severe form of ALS. It is a new procedure that will be considered Compassionate Use for me.
Please give me a chance to be part of this treatment.
Please give as you can TODAY      GIVE ME A CHANCE TO LIVE.
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$146,528 of $500,000 goal

Raised by 2,250 people in 3 months
Created April 3, 2019
Fundraising Team
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