Tonia Kever Hirschbuhl needs your support!

UPDATE-

Hello! We are writing to share some important updates and ask again for any help you can provide to Tonia and her family. It's been two years since we launched the first GoFundMe for Tonia, and it was incredible to see the support that she received. It's hard to articulate the impact of your generosity. Two years in, we are asking for your support again for a specific reason as you'll read below.

Tonia has been making semi-regular trips to Boston as she's been part of a trial since early on in her diagnosis. We know now that she is on trial medicine and no longer in the possible placebo group. This is the second trial she's participated in, as the first one put her liver at risk before being discontinued. We are happy to report that this second one has been smooth sailing since the beginning, and she tolerates it well. Whether or not this medicine ultimately becomes a part of the ALS treatment plan is still far from known, but her dedication to the trial has been steadfast.

Her Team of Doctors at Mass General has been wonderful, and making the trips to Boston has been essential, not only for the trial and treatments but because getting off the island and traveling gives us all something to look forward to.

Tonia is about to receive a new personalized wheelchair in the coming days, which should significantly improve her quality of life. Thankfully, our healthcare in Mass is really coming through for us for the chair, medicine, and most health-related issues; however, we know that these are uncertain times regarding federal and state funding for these types of programs.

Tonia is living as comfortably as possible with family, but we need to strategize getting her out of the house for excursions, day trips, and overnights to Boston. We are hoping to raise enough funds to purchase a wheelchair-accessible van that accommodates her and her new chair. With this, her quality of life will improve; without it, getting her anywhere beyond her own cottage will be very difficult, and the Boston trips will become impossible.

Tonia is looking forward to attending her daughter Sarah's graduation this May, having her sons around this summer, hitting up the beach at Jetties, and most certainly continuing on in her trial. In-person visits are a mandatory part of this trial. So with that, we come to you and ask you to give any amount you can to help raise the funds needed to get her a new van. Any funds raised beyond our goal will go toward travel expenses and caregiving expenses not covered under MassHealth (many hours are already covered, and we are so grateful for that!).

We have extended the goal to reflect this new need. Thank you all so much!

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Original POST:

Tonia was diagnosed with ALS the day before Thanksgiving last year. These past few months have been overwhelmingly challenging for our whole family, but especially for Tonia as she navigates her diagnosis.

ALS, also known as Lou Gehrig’s disease, is a brain disease that targets brain cells called motor neurons. Motor neurons send messages from the brain to muscles throughout the body. In ALS, as motor neurons die, a person progressively loses the ability to walk, speak, swallow, and breathe. ALS affects adults of all ages, and there is currently no cure. Symptom management and quality of life are the most important things for my sister to focus on as she navigates this devastating diagnosis. My sister Era and I have accompanied Tonia to Boston for her doctor's appointments. These appointments will increase in frequency as she begins a trial at Mass General this spring. Tonia has a lot of fight in her and has agreed to participate in a clinical trial with the hope of not only helping to slow her own disease progression but in an effort to help find a cure for this devastating disease.

Tonia, and her whole family, need your support in any way you give it. She has not been able to work since her diagnosis, and we all know that the cost of living anywhere, but especially on Nantucket, is near impossible, even under the best of circumstances. At the time of her diagnosis, Tonia was working full-time and helping to put her daughter Sarah through college at St. Lawerence University. Patients with ALS incur an average of $92,000 in direct costs and $51,000 in indirect costs related to the disease itself on an annual basis *. We have set up this Go Fund Me page for Tonia on her behalf, and 100% of the funds will go directly to her to help her pay for travel, medical, and everyday expenses.

Thank you for your support on behalf of Tonia and her kids, Michael, Wade, and Sarah, and our whole family.

We will be hosting a fundraiser on June 4th at The Gaslight on Nantucket from 2-5 PM, details forthcoming. If you can't support our efforts via Go Fund Me, please show up on June 4th!

source * (source American Life Fund)

It says that your donation with benefit Callie, but all funds go directly to Tonia.