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Uplift Mark Benefit Fund - Journal

Read Entries & Updates

 

Posted 2018-01-20T02:49:48Z

Pondering Suffering

I don't know if you will find this blog helpful, but I have, even though I don't fully understand the value of suffering.

Father Brodeski, our former pastor, was the first to reach out to Mark and I as we first began to wrestle with suffering over a year ago. This is because he understood. I highly value his insights because he walked the road of suffering with his sister for 17 years and struggled with the same questions of “why and for what purpose” that Mark and I struggle to comprehend.[...]

Posted 2017-11-17T03:06:00Z

The Honey-Do List is too Long

I would never recommend moving while dealing with this serious medical situation but In our case, we had no choice. We needed to move out of our bi-level duplex and into a ranch house. We are very grateful for the simplicity the new house brings however our honey-do list seems to be never ending. If you are so incline to lend a hand, I have made a wish list. Call, email or leave a message here if you’d like to volunteer.[...]

Posted 2017-10-16T00:16:06Z

Taking the new ALS drug!

This month, Dad began treatment with Radicava, which was just approved by the FDA this summer. It is the first new treatment for ALS in 22 years! It is not a cure, but the medication has slowed progression in some patients, and patients occasionally have shown improvement. There are few side effects, however, some people have an allergic reaction. So far, he has had no problem! The medication is given through IV infusion for 14 consecutive days followed by 14 off, repeating for 6 months. They taught Mom how to administer the medicine at home. You can read more about Radicava here.[...]

Posted 2017-10-14T23:23:09Z

Fundraiser update & eye-tracking machine

An update from Dad on 9/26: 

I would like to thank all the people who made the fundraiser at holycross last Saturday sucha great success. Including my brothers and sisters. All the different people and groups including CRECHE AHG, Knights, Marmion, Rosary. I would like to thank Fr. Parker and Fr. Twenty for all their prayers and support. I would like to thank all the people who came out to support the event! Your generous heart will not go unrewarded by God. My family prays for you every night.[...]

Posted 2017-09-20T16:26:44Z

Fundraising Dinner at Holy Cross in Batavia Septmber 23, beginning at 5:30

We Hope many of you will join us at the Uplift Mark Italian Dinner. Mark will be there to share in the fun. There are numerous raffle items to win. Most are $1 raffles some are $5 to enter. You can place your raffle tickets under any item you are interested in winning. John Lamperies will DJ, so who knows what may happen. Perhaps there will be a Glowing luminous sphere.[...]

Posted 2017-09-02T19:29:45Z

Bathroom progress!

UPDATE: bathroom project a little more than 1/2 way through. Subfloors, fans, lights, electric, wider doorway all complete. Almost to the details, floor tiles, cabinet, sink, and paint! Boy, are we going to celebrate the first barrier free shower.[...]

Posted 2017-08-31T00:40:39Z

Looking for basket donations

Holy Cross Church in Batavia is hosting a fundraiser for Dad on Saturday, September 23, 5-7:30 pm. The fundraiser will include a spaghetti and meatball dinner, cookout, 50/50, and raffles. There's more info on the fundraiser here

If you are able to donate a theme basket to raffle, that would be highly appreciated! Possible themes include "movie nights," "wine and cheese," "sweet treats," and "lucky lotto," but feel free to be creative![...]