Help us Extend Sharrys Life from A.L.S -Lou Gerigs Disease

Please Help Sharry DeGroff fight a Rare Form of ALS — She Needs Us Now!

Hi my name is Randi and I’m reaching out to help my best friend Sharry, who is like a sister to me, who is battling a rare gene called TBK1, it's a Rare Genetic form of ALS (Amyotrophic Lateral Sclerosis).   

For the last 1-½ years, it has progressed, taking away the ability to speak, swallow foods, liquids, and her own saliva. Sharry only gets her nourishment and medication through a feeding tube where she has already lost 23 pounds.

At just her age of 64, Sharry has always been a fiercely independent woman, someone who cared deeply for others, brought light into any room, and worked hard her entire life as a Respiratory Therapist.   

This cruel disease has put pressure on her airway, silenced her voice, weakened her limbs with difficulty to walk, needing a walker for balance and safety, making even simple daily tasks difficult to move around.                          

Why Do We Please Need Your Help?

Her bills are mounting up from medical expenses like therapy, medications and tube feeding nourishment which are deeply needed .

Insurance deductible as always has to be paid before most covered needed options can be given

All because of this devastating diagnosis!

But there is hope of slowing down the progression with some hopeful trial medications as well as:

We are asking for your support to help Sharry as insurance Does Not cover these two very important procedures to extend her life.         

The Ability to Do Stem Cell Treatments to Help Slow the Progression of the A.L.S.(Lou Gehrig's Disease) can cost anywhere from $15,000 to $50,000 depending where you get it done, either USA or Mexico or Panama city.

And:

To get Vitamin B12 injections of 50 MG's each to be mailed to her home monthly to also help Slow the progression of A.L.S.

Every Bit Helps to Slow the Progression to extend her life.               

If you know Sharry, you know she is a fighter, a giver, and a kind soul. Now, she needs us to fight with her.

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Even if you can't donate, please share this with friends, family, and anyone who might want to help knowing about A.L.S. and the treatments that can give hope. Every donation, share, and prayer means the world for Sharry.

Thank you for taking the time to read Sharrys story. Let's surround her with love and support in this difficult time.

With gratitude,

Randi & Family/Friends of our wonderful Sharry

Follow up

I went to St Louis on June 12th to see a specialist ALS Doctor that works with my very rare gene of TBK1

He did a EMG to see what parts of my body are progressing and what parts are still holding on.

Then he did a cognitive brain test to see the process of the Frontotemporal which is because with ALS Tbk1 gene that i have it comes from a Dementia gene from a family member. Ive been having some lose of some thoughts. When I came back to Florida 6/14 after St Louis my Fort Lauderdale ALS clinic also did Cognitive texting to see what's what will get that back week of 6/23/25

So Then Dr Miller from St Louis, Missouri took cells from me to do a biopsy them along with 4 other patients he has with TBK1 to see if I can do a Stem Cell treatment because I was explained from the Dr that I've been diagnosed over a year and with the ALS over a year he explained Stem cell treatments might not work or only give me a very small result There has been some people that it did slow down the progression, Everyone is different as well as with having the ALS in general

So hes taking our cells and doing what he's doing with all 5 of us in the Laboratory and working with those cells vigorously to find a trial treatment to help slow thre progression and hopefully be able to generate the cells to do a Stem Cell treatment that will work well

And if this works and hopefully very soon I won't have to go out of the country to do it

Cos Now it's Literally Just Been Approved to do the Stem Cell Treatments without the FDA approval here In the USA

I also just posted it

Please Please Pray